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Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Jeff G on March 20, 2013, 03:57:45 pm

Title: The Sustiva/Atripla Thread
Post by: Jeff G on March 20, 2013, 03:57:45 pm
I think Sustiva and Atripla are potent and well tolerated HIV drugs for many people so my intention on starting this thread is in no way an attempt on my part to get people to change their drug regimen ... if it ain't broke , don't fix it .

For many of LTS finding a drug that didn't make us vomit or shit our pants more than twice a day was a pipe dream and more than we could dream for . When Sustiva became available it was a wonder drug for many of us and the side effects seemed like nothing compared to what we had to choose from before .

The people who didn't tolerate it sometime had very scary and life threatening side effects but we never heard too much from that crowd and Sustiva and eventually Atripla became the darling drug of choice for its makers and doctors alike . I have found that many doctors still push Atripla as a preferred treatment even though we now have many more choices . I personally think that this drug will one day be part of our history and rarely used , if at all .     

I think that since we have so many more choices perhaps the time has for us to have a conversation about our experiences with Atripla while on it and our experiences once we switched to a new combo .

I'm curious about this because I recently switched from Atripla to Intelence / Truvada and had a profound improvement in my sleep and over all mood and energy level when I am awake . I have a chronic pain condition that also has dramatically improved in a short time . Its wonderful to sleep through the night and wake up with a clear head .

I would appreciate hearing from others what they think about this subject and they're own experience with these drugs .   
Title: Re: The Sustiva/Atripla Thread
Post by: darryaz on March 20, 2013, 04:30:00 pm
I personally have had very few side effects from Atripla, and those I do have are fairly easy to manage.  I plan on staying with it as long as I can.

Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on March 20, 2013, 04:57:25 pm
I think Sustiva and Atripla are potent and well tolerated HIV drugs for many people so my intention on starting this thread is in no way an attempt on my part to get people to change their drug regimen ... if it ain't broke , don't fix it .

For many of LTS finding a drug that didn't make us vomit or shit our pants more than twice a day was a pipe dream and more than we could dream for . When Sustiva became available it was a wonder drug for many of us and the side effects seemed like nothing compared to what we had to choose from before .
 
My approach was/is the same as far as the "ain't broke, don't fix it" concept.
And yes, those old drugs were nasty in comparison.
I would like to add that my experience with Sustiva/Atripla never really seemed all that bad early on.
After being on Sustiva since about 2001 and Atripla since 2006, the memory and cognitive problems became a larger issue.
These problems were subtle at first but eventually became significant issues in the quality of my life.

I also recently switched 3 weeks ago from Atripla to Truvada/Isentress.
While the Isentress has been giving me some sleep issues (insomnia), my head is still much clearer in the morning.
I still have memory/cognitive problems that I am not sure will ever go away due possibly to the length of time on Sustiva.
It still is a nice change in the morning from what I had accepted as my new normal for all of those years.

I kinda had to push my ID doctor for the change.
It didn't take too much pushing but he did surprise me by commenting that I am the ONLY patient he has taken off of Atripla for this reason (memory/cognitive issues).
After reading SO many people here making comments like "foggy brain", "fuzzy head", "out of it", "my memory is so poor", "shit for brains", etc. , it astounded me that my doctor reacted as he did.

I am glad this topic was framed in this manner.

One thing I would add to the mix would be for those who reply to state the DURATION they have been on Sustiva/ Atripla.
It would be interesting to understand if the length of time has made a difference in how these meds have effected us.

Thanks for the post! :)
Title: Re: The Sustiva/Atripla Thread
Post by: Grants Committee on March 20, 2013, 05:22:43 pm
Just saw my ID doc today... I am going to stay on the Atripla for the time being, but she says there is a new once a day dosage of Isentress?? (I think it may be that) that should be out late this summer and that she and I may want to consider switching me to this....

She just came back from CROI and said that there is still mixed information on Atripla - some studies are showing the cognitive issues, while other studies have shown that people on Atripla have better cognitive functioning than those people on some other regimens....

She said there is a component in stribold (??) that they still don't know enough about and that is why she is a bit reserved in prescribing it.

My experience w/ Atripla has been uneventful to date - but, my doc and I did talk about the fact that I may not necessarily be aware of some of its negative impacts until I switch and see the difference that another med may or may not deliver.

I should have a better idea of whether I will be switching or not come July 3rd or sometime in October.

Til then.... Atripla it remains.
Title: Re: The Sustiva/Atripla Thread
Post by: darryaz on March 20, 2013, 05:34:04 pm
One thing I would add to the mix would be for those who reply to state the DURATION they have been on Sustiva/ Atripla.

Good idea.  I've been on Atripla since February 2008.

To be fair I do have some cognitive issues, but I've also had meningitis and multiple brain surgeries so it's impossible to determine where the issues really come from.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 20, 2013, 05:48:13 pm
I began Sustiva when it first became availaible in 95-96 . Then on to Atripla when Medicare approved it .

One of my fears about Atripla is that some of the cognitive changes people have can be subtle and happen so slowly that you are not aware that its happening . I do feel that's the way it happened with me . My feelings on this subject is one that still evolving and that's why I think we really need this thread about this drug . Sustiva saved my life and I would have taken it anyway had I known what I do now .
Title: Re: The Sustiva/Atripla Thread
Post by: buginme2 on March 20, 2013, 08:01:13 pm
Been on Atripla since December 2010.

My doctor and I recently decided it was time to switch to something else.  I have been prescribed Complera however, I haven't started it yet because I have several months of Atripla reserve built up and will finish them before I switch (since the change wasn't due to an emergency or urgent situation I'm not going to just toss them). 

I've only been on it for two years and really have no major complaints.  It is after all a life saver.  However, the dreams/sleep disturbances have become significant and I am looking forward to a good nights sleep without having to take something to do it.

I have also noticed slight cognitive issues.  I've started completely forgetting names and my thought process is a little slower.  It's not significant however, I feel like sometimes I get tripped up when I shouldn't and that scares me for my work.  I need/want to work and further my career and don't want this medication to stand in my way.

I am also hoping that a change will improve my lipids and blood sugar (they are both just a couple points too high). We'll see.

Other than that its been mostly a positive experience.  I haven't experienced any depression or mood changes that some people experience.

I'm hoping that the transition is a smooth one. 

Atripla is a great drug but I have noticed less and less people posting that they are starting on it anymore.  It seems Stribild is the new first timer front runner (my doc is also a little hesitant about Stribild right now until more data comes out about the kidney issues, hence the Complera choice). 
Title: Re: The Sustiva/Atripla Thread
Post by: phildinftlaudy on March 20, 2013, 08:10:33 pm
Just saw my ID doc today... I am going to stay on the Atripla for the time being, but she says there is a new once a day dosage of Isentress?? (I think it may be that) that should be out late this summer and that she and I may want to consider switching me to this....

She just came back from CROI and said that there is still mixed information on Atripla - some studies are showing the cognitive issues, while other studies have shown that people on Atripla have better cognitive functioning than those people on some other regimens....

She said there is a component in stribold (??) that they still don't know enough about and that is why she is a bit reserved in prescribing it.

My experience w/ Atripla has been uneventful to date - but, my doc and I did talk about the fact that I may not necessarily be aware of some of its negative impacts until I switch and see the difference that another med may or may not deliver.

I should have a better idea of whether I will be switching or not come July 3rd or sometime in October.

Til then.... Atripla it remains.

Well, I guess the fact that I unknowingly posted the above while signed in under "Grants Committee" may say a lot about possible cognitive issues and Atripla....  Oopsy!
Title: Re: The Sustiva/Atripla Thread
Post by: OneTampa on March 20, 2013, 08:37:12 pm
I have posted on the boards before about my drug regimen that includes Sustiva.  I have been on Sustiva since the late 1990's at a reduced dosage--400mg.

I have always had vivid pleasant dreams since I was a child.  I continue the dreams as an adult.  If anything, I have noticed the dreams are in higher cinematic presentations with great sound.  No nightmares. I now get about 6-7 hours sleep each night instead of my previous 8-9.  It may have something to do with age as I turn 60 later this year.

I have not noticed a cognitive decline.  In fact I completed my undergraduate degree (cum laude) in 2000 and graduate degree in 2010 while working full time. If anything, I tend to remember too much--some things I wish to forget. I even gained a reputation as the "go to" person at work when staff got stuck and didn't want to just look up the info.  ;)

Now, the one thing that I have noticed over the last few years is a slight melancholy mood at infrequent turns.  No one has mentioned it to me but I have noticed it.  It is not debilitating. I once posted that my low dose Sustiva may be finally catching up with me.  However, since the mood changes are a bit removed from my usual nature, I take note. I also discussed it with my doctor. 

Coincidentally, I have also had a few life changing events with my mother passing fairly recently, my late twin sister's daughter now grown up to look soo much like her and reminding me how much I miss my sister. A few other close friends and family members have also died recently.  These may or may not be contributing factors to the mood slumps at times.

I am now concentrating on landing another permanent full time position and will revisit my drug regimen discussion with my doctor at another time.

Overall, my reduced dose regimen is working well for me and my lab numbers are amazing especially considering where I started 28 years ago (CD4 around 75, diagnosed with AIDS Related Complex, and given less than 2 years to live).



Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 20, 2013, 08:38:09 pm
Well, I guess the fact that I unknowingly posted the above while signed in under "Grants Committee" may say a lot about possible cognitive issues and Atripla....  Oopsy!

LOL ... the Grants Committee is always welcome in any of my threads  ;) .
Title: Re: The Sustiva/Atripla Thread
Post by: buginme2 on March 21, 2013, 12:02:37 pm
Just saw my ID doc today... I am going to stay on the Atripla for the time being, but she says there is a new once a day dosage of Isentress?? (I think it may be that) that should be out late this summer and that she and I may want to consider switching me to this....


Hey Phil, I think she meant the new once day dosage of Dolutegravir.  It's going to be approved later this year and its in the same class as Isentress.  It's all the buzz.  Looks like a very strong well tolerated new drug of choice.


She said there is a component in stribold (??) that they still don't know enough about and that is why she is a bit reserved in prescribing it.

My doctor has said the exact same thing. 
Title: Re: The Sustiva/Atripla Thread
Post by: wolfter on March 21, 2013, 12:10:55 pm
I hope to read more from other long term Sustiva users.  I had very little side affects at first but developed horrible cognitive abilities.  I gained a lot of it back, but no where near where it should be for someone my age.

Other than the severe insomnia issues, I love my current combo.  Isentress, Intelence and Truvada.  I actually enjoy the vivid dreams during the short periods of sleep.  Just have to be careful to seperate reality from the dreams.  Sometimes I'm not sure.

Wolfie
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 21, 2013, 12:59:59 pm
Its great to have all the input and experiences from you guys ... Also , One Tampa , your the only person beside the one Ann talks about who is on a reduced dose . I think you guys on a reduced dose is a rare thing right ?

I have never had a doctor discuss reducing the dose even when I was having a horrible time and begging to change my meds from Atripla to anything else .

Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on March 21, 2013, 01:40:50 pm
begging to change my meds from Atripla to anything else .


I still don't quite understand this "begging" issue with changing meds, certainly in light of the fact that when you eventually changed to something it was for a medication that has been FDA approved now for five years. What's up with that?
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on March 21, 2013, 02:46:36 pm
I still don't quite understand this "begging" issue with changing meds, certainly in light of the fact that when you eventually changed to something it was for a medication that has been FDA approved now for five years. What's up with that?
well, a few things come to mind...

1) AZT, DDI, etc. were approved by the FDA. (scarey, but better than nothing?)

2) Many of us LTS couldn't/can't quite let go of the thought that there are still a limited number of meds to choose from especially if you have developed resistance.

3) Every drug has a list of side effects that you may or may not encounter. (ie: trading off a fuzzy head with insomnia)

4) So far, many of those who have posted on this topic here and elsewhere in the forums seem to have had the effects of Sustiva creep up on them in a subtle way over a long period of time.

5) Um, oh darn it! Forgot the 5th one. Must be the residual Sustiva effect. (RSE tm)

PS- Welcome Grants Committee to the rest of the forum. :) tee hee.

Oh, edited to add:

5.) Many doctors are as Jeff stated, stuck in the "if it ain't broke" frame of mind.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 21, 2013, 02:53:13 pm
I still don't quite understand this "begging" issue with changing meds, certainly in light of the fact that when you eventually changed to something it was for a medication that has been FDA approved now for five years. What's up with that?

Many ID docs are reluctant to switch a regime that's working , especially since I had already been on it a long time ... another hurtle with me was that we did try two of the new meds and I was resistant to one that they don't routinely do a resistance test to and its not included in the standard genotype test . I had to take the drug for six weeks to see if it was working , it wasn't and my viral load went sky high . The other regimen they tried didn't work out either so I was back to Atripla with pretty much a whole summer of feeling crappy and high copays for my efforts ... so I again put off making the decision until now when I had the time and could afford it .

Many people are put on ARV's when they are already very sick and that's what happened to me . When I recovered I assumed the way I was feeling on treatment was what you get ... and it was 1000 times better than what I was feeling before . I wanted to have this conversation because many of us came into treatment very sick and some of the side effects of our meds were slow to happen or so subtle that you don't really know how bad you feel unless you have something to compare it too .

I was on chemo therapy for so long I was surprised at how I felt a month after it was stopped . I had simply forgotten what it was like to feel good and had excepted my Lott without complaint . I'm having the same realisation with this med change .   
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on March 21, 2013, 03:01:22 pm
Still doesn't make much sense to me, additionally so because of your lipid panel numbers and the known (possible) connection of same to using Atripla.



Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 21, 2013, 03:05:57 pm
Still doesn't make much sense to me, additionally so because of your lipid panel numbers and the known (possible) connection of same to using Atripla.





Then you are simply not listening to the facts . 
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on March 21, 2013, 03:09:39 pm
Then you are simply not listening to the facts . 

Just fess up to being a med weenie and let's move on.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 21, 2013, 03:10:47 pm
Just fess up to being a med weenie and let's move on.

Just fess up to being Miss cant be wrong .
Title: Re: The Sustiva/Atripla Thread
Post by: Ann on March 21, 2013, 03:17:17 pm

Still doesn't make much sense to me, additionally so because of your lipid panel numbers and the known (possible) connection of same to using Atripla.



Then you are simply not listening to the facts . 


And unfortunately, a lot of doctors don't seem to listen to the facts about Sustiva ie stuff like lipid panels.

Nor do they listen to their patients' experiences - they just brush them off with a "it's keeping your virus under control."
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on March 21, 2013, 03:20:54 pm
Just fess up to being Miss cant be wrong .
good luck with that.

Miss P., as someone who has stated that you have no more options with med choices any longer, I am surprised that you have the attitude about this topic.
You of all people should know that we still do not have a cornucopia filled with meds.
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on March 21, 2013, 03:22:41 pm
And unfortunately, a lot of doctors don't seem to listen to the facts about Sustiva ie stuff like lipid panels.

Nor do they listen to their patients' experiences - they just brush them off with a "it's keeping your virus under control."
amen.
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on March 21, 2013, 03:23:36 pm
And unfortunately, a lot of doctors don't seem to listen to the facts about Sustiva ie stuff like lipid panels.

Nor do they listen to their patients' experiences - they just brush them off with a "it's keeping your virus under control."

I think we should also add (though of course I somewhat also agree with what you say, though it's personally not been my experience) that sometimes a patient thinks that they're expressing something to a doctor, but in fact they're somewhat passive in expressing it, so the doctor doesn't think there's something really wrong. I've been guilty of this in the past myself, but when I decided to be more forceful in saying that I needed a better resolution then the doctor reassessed the situation and attempted to more adequately resolve it. Hope that makes sense.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 21, 2013, 03:30:43 pm
I think we should also add (though of course I somewhat also agree with what you say, though it's personally not been my experience) that sometimes a patient thinks that they're expressing something to a doctor, but in fact they're somewhat passive in expressing it, so the doctor doesn't think there's something really wrong. I've been guilty of this in the past myself, but when I decided to be more forceful in saying that I needed a better resolution then the doctor reassessed the situation and attempted to more adequately resolve it. Hope that makes sense.

That does make sense and is something I always advise people who are going to treated for anything serious or chronic , we have to advocate for ourselves .
Title: Re: The Sustiva/Atripla Thread
Post by: Ann on March 21, 2013, 03:32:39 pm
Hope that makes sense.

Yes, it makes sense. But sometimes even being vocal and demanding gets you no-where fast. In my case, I'd been asking to go on meds for quite some time - getting louder and more strident as the months passed - and kept getting told "your numbers are too good".

It finally took me not attending appointments for over six months (rather than the usual every three) for them to sit up and take notice.

When they asked why I'd missed appointments, I said - Why the hell should I bother? You keep refusing to do anything for me other than take my bloods and pat me on the head, saying my numbers are fine, all the while ignoring all my complaints about being sick and tired of feeling sick and tired all the effin time. And ignoring all the infections (not OIs) that I kept coming down with.

The squeaky wheel gets the grease, but sometimes it takes something more like nails on a chalk-board to really get their attention.

I should add - I love my doctor to bits, but he can be stubborn as they come sometimes.
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on March 21, 2013, 03:36:24 pm
Weird. All of this is just somewhat alien to my experiences with innumerable doctors. The only push back/restrictions that I've had have been wholly due to obviously documented/genotyped resistance issues.
Title: Re: The Sustiva/Atripla Thread
Post by: wolfter on March 21, 2013, 03:36:48 pm
Back on track please.  I was beginning to enjoy discussing it until ....well...whatever happened.
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on March 21, 2013, 03:42:00 pm
Back on track please.  I was beginning to enjoy discussing it until ....well...whatever happened.

Ah, you mean when we were all just sitting around blaming the doctor for everything?
Title: Re: The Sustiva/Atripla Thread
Post by: wolfter on March 21, 2013, 03:42:54 pm
This thread really addresses resistence which is invaluable to so many.  It applies to all sections of this cite and we can all benfit from it.

I've already been told and understand I'm on the last coctail available. 
Title: Re: The Sustiva/Atripla Thread
Post by: wolfter on March 21, 2013, 03:44:02 pm
Ah, you mean when we were all just sitting around blaming the doctor for everything?

I don't read all those parts.   ;) 
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on March 21, 2013, 03:45:37 pm

I've already been told and understand I'm on the last coctail available. 

Oh? I didn't know that. So you've been on Fuzeon and are now resistant to that?
Title: Re: The Sustiva/Atripla Thread
Post by: bocker3 on March 21, 2013, 04:33:50 pm
I've been taking Sustiva/Atripla since Dec 2005. 
Other than occasional vivid dreams and a "drunk" feeling if I eat anything high in fat near pill time, I've been pretty side effect free -- thus far.  I sometimes get a bit of diarhea, but that is more likely due to the Norvir boost for my Reyataz.
I've not noticed any cognitive issues and my lipids have never been better -- and I've been on statins since the early 90's.

I have been planning to talk to my doc about finding a way to get to 3 drugs instead of the 4 I take.  I have some slight resistance to most nukes (except for tenofivir), so that is why the Reyataz was added back in June 2006.  The desire to change is not side effect based, but rather a little around cost and bit about pill volume.  I haven't yet for the same old -- it ain't broke reasons.

Interestingly, my doc did NOT suggest Sustiva -- he was pushing me toward Kaletra, but with my family cardiac history I told him "absolutely not".  He listened and when I said Sustiva, he went along.  I was definitely unequivocal in my stance on Kaletra and he never pushed.  So -- I think it is important to be clear and direct.

So -- there is my personal input.

Mike
Title: Re: The Sustiva/Atripla Thread
Post by: Ann on March 21, 2013, 04:50:13 pm

I was definitely unequivocal in my stance on Kaletra and he never pushed. 


Even though my doctor wanted me to wait longer (he admitted three months after I started that he'd hoped I would have wait until dolutegravir was approved), one thing he didn't quibble with me about was the fact that I refused to even consider taking Sustiva.

He actually agreed with me - due to my adverse reactions to various other meds and also because more and more of his patients were increasingly unhappy with it.

He really has a high opinion of dolutegravir - I've never heard him speak about any other med so enthusiastically. He's a highly respected hiv pharmacologist, so I think it's safe to presume he knows of what he speaks.
Title: Re: The Sustiva/Atripla Thread
Post by: jkinatl2 on March 21, 2013, 06:50:08 pm
Thanks for starting this thread, Jeff. I have talked about my experiences at length before, but not sure whether I have written them out at length. Here goes:


I started Sustiva as part of a cocktail in the fall of 1998 right after it was approved. The doctor I saw was a very well respected doctor. I was actually shocked that he accepted Medicare, as his office was VERY upscale and so, it seemed, were his clientelle.

It was a far cry from the clinic I was in before, which was a state-run IDC. It was not unusual there to be sitting in the waiting room reading my book next to a row of handcuffed prisoners, some of whom would start fights. The staff were mostly med students doing internships, nurse practitioners, and a few doctors fresh out of med school, and there was only one ID specialist who oversaw everything. Not an optimal place, and when I started getting some serious illnesses, I found what I hoped was a better choice. It was, at least for a bit.

I trusted the man, who had a nice if brusque demeanor and seemed to listen to my issues.

At first, the only side effects were vivid dreams. I have always had them, but these were epic. I actually remember the plot of a two-part Star Trek: Voyager dream. It was a two-parter since I had to get up in the middle of it to pee. I swear that Majel Barrett-Roddenberry actually announced "Last time on Star Trek:Voyager" when I laid back down, and did a fifteen second recap of the dream before finishing the episode.

I was really happy about that.

I was actually happy about a lot of stuff. Family was healthy, my outreach organization was still limping along, had a boyfriend and a couple of ferrets. Though I have had a history with major depressive disorder, I was doing well on a low dose of Welbutrin, and at 32, was in the best shape of my life.

After about three months on Sustiva, the dark thoughts started creeping in. Not all at once, not quickly to be sure*. But from out of nowhere, literally nowhere, I would start thinking about suicide. It was terrifying because intellectually, I was aware that it was an irrational thought. I had no REASON to be depressed - there was no SITUATIONAL catalyst. Something was seriously fucking with my brain.

I told my doctor. He dismissed my mental health issues as, in his way of thinking, they had little to do with HIV or my meds. He upped my dose of Wellbutrin until I was anxious all the time, and sent me on my way.

This was before AIDSMEDS. And I wasn't really a 'support group" guy. The support groups I had gone to in the early 90s were death marches, plain and simple.

But I went to one, a support group that happened to be next to and connected with an HIV clinic. I started going. And started listening to the people there. Even though it had been seriously downplayed from the list warnings and contraindications, the threat of severe, debilitating depression, hallucinations, psychosis, and suicidal ideation related directly to Sustiva was more than evident.

Realize that this was 1999, HAART had only been out for three years. People were still dying, and those who weren't were being transformed into ghoulish funhouse-mirror reflections of their former selves. Of course people were committing suicide. Add onto that the rate of new infections, with newly diagnosed people thinking that this was their future. Unlike today, when HIV seems to be marketed as a mild inconvenience to most, people who were getting infected HAD seen the horror and the suffering. The number of people with underlying major depressive disorder becoming infected was, I submit, higher than it is today.

But I went to the group, and found that others had endured the same experiences as myself. I was, and am, a severe skeptic regarding anecdotal evidence. So I sharpened my scientific skills, acquired a physician's medical license number to log into restricted (from the public) scientific studies and peruse them myself. Aegis.org was only a dream at this point, and the CDC was of little use when it came to referencing things that weren't behind a paywall.

After a crash course in statistics and data interpretation, I was shocked to see how deep the rabbit hole went. Suicide rates leapt for HIV patients on Sustiva, and almost to a person they were blamed on pre-existing depression despite the common knowledge that Sustiva's greatest triumph was it's ability to transcend the blood-brain barrier.

I continued my research, of course. But I also bought a copy of "Final Exit" and prepared to kill myself.

My doctor, and frankly the entire medical paradigm at the time, had convinced me that the results of the medications in bloodwork in suppressing viral load and allowing the rebuilding of my immune system were worth the side effects.

Except that I was going to kill myself, which would not have reflected kindly in my bloodwork. Though in all fairness, it would have stopped the virus in my body.

Not sure what managed to get through to me, but one day, instead of driving my car full speed into an underpass column, I went instead to the infectious disease clinic next to the support group, filled out the paperwork, fired my doctor over the phone (when I called to request a transfer of records) and quit Sustiva.

The depression, the suicidal thoughts, all went away in a matter of weeks. I tapered off and eventually quit the Welbutrin, and felt that I had dodged a semi-literal bullet.

I try REALLY hard not to prosthelytize when it comes to Atripla/Sustiva. It's terrific at suppressing viral loads and encouraging immune repair. It does great work at attacking HIV in the CNS. And when it works, it works almost seamlessly it appears.

But when it doesn't, it is a dangerous and deadly drug. I thoroughly agree with Jeff that we will come to a place where enough alternatives exist (that do the same thing as well or better) without the accompanying possibility of severe CNS disruption that Sustiva/Atripla, like many drugs before it, will no longer be prescribed often if at all.



TL;DR - Sustiva fucked my shit up. Would recommend only with all the caution in the world, and even then alongside therapy for at least a year to watch for slow-developing psychosis and suicidal ideations.


Title: Re: The Sustiva/Atripla Thread
Post by: WillyWump on March 21, 2013, 07:01:09 pm
Very intersting read JK, Thanks for sharing.

-Will
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on March 21, 2013, 07:16:46 pm
maybe i missed it jk but i'm curious as to how long you were on Sustiva.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 21, 2013, 07:23:32 pm
JK , I cant thank you enough for sharing your story . I was hoping you would post in this thread because your story is one of the reason that I opened my eyes to change and got me thinking that I needed to not give into that 1995 fear of changing meds that I had held on to for so long .
Title: Re: The Sustiva/Atripla Thread
Post by: buginme2 on March 21, 2013, 07:55:33 pm
JK, powerful story, thanks for sharing.

Title: Re: The Sustiva/Atripla Thread
Post by: Common_ground on March 22, 2013, 02:34:12 am
Since these meds , Stocrin and Truvada was the first I went on I had no reference as to how much should I put up with or expect in terms of side effects. You can just read that much from others but If you haven't experienced it yourself it might be hard to really apply, since some are doing well when others don't on this drug.

The obvious ones that I could certainly pin point like this drunken feeling was easier to understand , and maybe do something about like taking it on an empty stomach.

But what I didn't realize until I got off the Stocrin was how it affected my thinking process. Everyone says first year with HIV is rough, so I just linked my depressive thoughts with "Well, I have HIV, it will get better!" and that was it. 4 days off the Stocrin and I am much more emotionally stable, calm and relaxed.
Earlier I could think of something laying in bed and for no reason just imagine worst case scenarios, start to cry(!) and feel so weak and I couldn't for the love of god understand myself WHY this happened, there was no reason to think like this.

I reckon there are people doing well on Atripla and with efavirenz in their regimen, but be vary of what might happen subconsciously and don't dismiss it.


 
Title: Re: The Sustiva/Atripla Thread
Post by: jkinatl2 on March 22, 2013, 03:27:48 am
maybe i missed it jk but i'm curious as to how long you were on Sustiva.


From start to stop, roughly six months. Which is about three more than I should have. Like a lot of LTS folks, the notion of "promoting cross resistance to the entire class" and "eliminating a viable option when the future is vague" rang like a bell in my head. This experience helped my mindset evolve regarding that issue.

Title: Re: The Sustiva/Atripla Thread
Post by: sam66 on March 22, 2013, 08:48:24 am
 I've been on Atripla for 6 years now, pretty much from the start.
 It seems to be working well for me UD 6 years, but memory , joint and lipid problems as result of Atripla I'm sure.

 I've been thinking about asking my doc about a change, but may be I will have to deal with other side effects.
  Some times I feel like having a change for changes sake

 Thanks for starting the topic and all the posts ( but I'm still not sure what to do  :-\ )
 
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on March 22, 2013, 06:00:04 pm
It's been 3 weeks since my med change off of Atripla.
I noticed an immediate change from day one.

The best way that I am able to describe it is that over the years it seemed as though a veil was put in front of my brain one layer at a time.
It was difficult to tell when another layer was added.

It feels like at least one veil has been lifted at this point.
That one layer gone has made an incredible difference in my ability to think.
I'm not sure how many more layers will vanish, if any, but I will NEVER take a med with Sustiva again.

This is just my honest personal experience. Nothing more, nothing less.

I feel liberated in a way that I didn't know was possible.

The insomnia with my new meds is something that I need to address soon but at this point the trade off was well worth it. :)
Title: Re: The Sustiva/Atripla Thread
Post by: OneTampa on March 22, 2013, 06:58:02 pm
Its great to have all the input and experiences from you guys ... Also , One Tampa , your the only person beside the one Ann talks about who is on a reduced dose . I think you guys on a reduced dose is a rare thing right ?

I have never had a doctor discuss reducing the dose even when I was having a horrible time and begging to change my meds from Atripla to anything else .

Jeff,

Yes. to my understanding it is unusual.  I also take a reduced dose of Viracept.  I started the regimen years ago when my doctor read about a small study that mentioned the reduced dosages were just as effective as regular dosages for a large percentage of patient cohorts with the added benefit of reducing side effects. There have a been a few studies of late that support this methodology (e.g. http://www.ncbi.nlm.nih.gov/pubmed/17461857). I have no resistance issues to-date.  I must add that I am 99 percent compliant in taking my meds.
Title: Re: The Sustiva/Atripla Thread
Post by: sydneyson31 on March 25, 2013, 09:37:53 am
Hi all, this is my first post. I found myself here after searching for information for Eviplera/Complera which my doctor has just prescribed.

I've been taking Atripla for the past 4 years or so. I recently got a new doctor and one of the first things we talked about was changing from Atripla to something else as I've been suffering terrible debilitating depression for nearly the whole time I've been taking Atripla. My previous doctor put me on Cipramil/Citalopram to treat the depression with mixed results. I've had to keep increasing the dose of this over the last couple of years and have never "felt right" in my own mind.

I recently asked to be referred to a psychiatrist because I was so concerned with how I was feeling and one of the first things he suggested was to change to a drug combination that does not include Efavirenz.

I read with significant interest some of the comments above regarding cognitive function decrease as this is something that has been bothering me for some time as well. Over the past 4 years I am simply not "as sharp" as I used to be. I forget things easily. I have to write everything down and can't remember what I did yesterday.

I'm so annoyed at myself that I didn't come here sooner and also for not insisting to my previous doctor that he provide alternative medications. I do feel fortunate that despite my depression and suicide idealisation and 2 attempts that I am still here.

I appreciate so much that so many of you share your experiences and knowledge so frankly and freely. Thank you. You have helped me so much in just a few short hours.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 25, 2013, 10:01:08 am
Hi Sydney and welcome to the Forums . I'm very happy you have decided to join us and this particular thread was in part started by me for people like you and me as well .

I also went through an acute phase of depression and thoughts of suicide . I hope you get your doctors attention and get off the Atripla asap .
Title: Re: The Sustiva/Atripla Thread
Post by: sydneyson31 on March 25, 2013, 10:07:36 am
Hi Sydney and welcome to the Forums . I'm very happy you have decided to join us and this particular thread was in part started by me for people like you and me as well .

I also went through an acute phase of depression and thoughts of suicide . I hope you get your doctors attention and get off the Atripla asap .

Thanks, started Complera/Eviplera this evening. Hoping it improves how I am feeling as I am otherwise healthier than I have ever been (HIV notwithstanding). Will drop back in and let you know how I get on with the switch. Thank you again for sharing your story.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 25, 2013, 10:17:12 am
Thanks, started Complera/Eviplera this evening. Hoping it improves how I am feeling as I am otherwise healthier than I have ever been (HIV notwithstanding). Will drop back in and let you know how I get on with the switch. Thank you again for sharing your story.

I'm so glad you made the switch , I would be worried about you until you got that changed and sorted out  . I hope your improvement is as rapid as mine was when I changed my meds .
Title: Re: The Sustiva/Atripla Thread
Post by: sydneyson31 on March 25, 2013, 10:21:42 am
I'm so glad you made the switch , I would be worried about you until you got that changed and sorted out  . I hope your improvement is as rapid as mine was when I changed my meds .

Thanks, me too. I am optimistic :)
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on March 25, 2013, 10:38:08 am
Welcome Sydney!

I totally agree that you made the right move.
Wish I had done it sooner.

Best wishes for you on the new meds! :)
Title: Re: The Sustiva/Atripla Thread
Post by: scotty54 on March 25, 2013, 05:14:02 pm
Thanks to all that have previously shared.  So many of them I can identify with.

Began Atripla 2006 and switched to Complera in 2012.  More than 6 years.  Viral load suppression/CD4/% stats all improved and remained very good.

About 2 years into treatment, noticed some very subtle changes.  The usual memory challenges.  Driving in unfamiliar territory without a GPS could cause real terror.  Would start a conversation and have trouble directing the flow/emphasis as originally intended.  Mental awareness (or as I say at times the loopiness) was notable.

Sleeping difficulties were worse.  Twas a rare night to fall quickly to sleep and remain fitfully asleep.  On several occasions I awoke to a strange involuntary jaw-clenching episode (neuropathy?).

Sept 2012 made the switch to Complera.  Mental alertness and loopiness (not to be confused with loonyness----not quite there yet) about 50% better.  Sleep issues about 30% better.  Gaseous problems associated with Complera mostly subsided.  Still considering Stribild or Dolutegravir combo later this year, not making any quick decisions.

Try to assess my health on three counts.  Mental alertness, ability to sleep well and lab results.  If any have declined, the red flag goes up.  And it is re-affirming just getting it on a post or paper.

Watch out for those ex-Sustiva users zipping along without GPS!
Title: Re: The Sustiva/Atripla Thread
Post by: Pricho01 on March 26, 2013, 06:22:55 pm
Lets just say that the knives in the draw started to look extremely attractive to me....!
Title: Re: The Sustiva/Atripla Thread
Post by: MarkB on April 12, 2013, 01:32:17 pm
I'm a bit hesitant about contributing to a thread which seems to have run its course, but what I experienced may be useful to those who are finding Atripla difficult (obviously many if not most of you tolerate it well).

While it did the job - I became undetectable within a couple of weeks, and remained so - I found the psychological side effects increasingly hard to bear. I was having nightmares, mood swings and anger, cognitive difficulties and suicidal tendencies. For most of the time I was living with an indefinable sense of dread which I couldn't shake off. However, there were no physical issues, and it had the benefit of being a med. that could be taken without food, so the thought of changing my regime was not without its own concerns. But people who are close to me advised me that I should talk it through with my clinic, which I did. Their response was to put me on Eviplera (Complera).

That was a month ago; since then things have changed dramatically: I'm sleeping peacefully, I have had no nightmares, no anger issues or feelings of wanting to commit suicide. I'm still undetectable; my CD4 count is 845 and 50%, which my doctor thinks are "solid" results. Some time ago I actively sought to end my life; I now wonder how much of that was down to the medication. But be that as it may, the change of medication appears to be going well for me, and I have no wish to go back on Atripla.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on April 12, 2013, 01:53:04 pm
Hi Mark ,and thanks for sharing your story with us . I'm hoping this thread continues for as long as people are taking Atripla , your experience are needed and welcome .

I can realate to every single word you wrote and just this morning I told a friend that this is the first time in 15 years that I feel clear in my thinking and alive again , I also feel for the first time in a very long while that I'm healthy and happy .

I had some running around to do today and I wasn't tired or anxious or feeling fearful . I feel good .
Title: Re: The Sustiva/Atripla Thread
Post by: Matts on April 12, 2013, 05:15:34 pm
I think that Nobody with even the slighest psychological problems and disorders should take Atripla/Sustiva. There are better drugs meanwhile.
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on April 12, 2013, 09:02:19 pm
Hi Mark ,and thanks for sharing your story with us . I'm hoping this thread continues for as long as people are taking Atripla , your experience are needed and welcome .

thanks Mark!
and thank you too Jeff!
this thread is too important to drop.
changing meds changed me.
(enough to say goodbye to Atripla, I won't miss ya.) :)
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on April 16, 2013, 10:36:42 am
well, I went to my ID doc yesterday for the first time since my med change (march 1st).
told him of the profound improvement I experienced since "retiring" the Atripla.
(i'm on Truvada/Isentress now)

also discussed this thread with him.
he previously made a comment about this website (about a year ago), and he said that this was one of "good ones". :)

anyway, he seemed a bit surprised at my excitement but also showed intense interest at what I was saying.
he also admitted to me that he has another patient with similar issues and I think he may be thinking about a change of meds for him or her.
it felt good to have him validate what I have been complaining about for far too long. :)

since he had previously expressed positive comments about POZ, I decided to begin the conversation with a print out of Jeff's (being a global moderator helped btw ;D.) original post.
he chuckled a bit at the humor but it DID get his attention.
I then went on to explain that my experience with Atripla was REAL and IS real for many (not all) others.

the visit felt very productive and I left feeling like I had his support on many levels.
(he has been my doc for 16+ years and I have always thought very highly of him even though I tend to get impatient from time to time)

my attitude about med changes has loosened up a bit because of what I have learned here in these forums.
perhaps my doc has even opened up to more possibilities too.

m.
Title: Re: The Sustiva/Atripla Thread
Post by: bufguy on April 16, 2013, 01:29:35 pm
I've been taking Atripla for almost five years and consider it a wonder drug. When diagnosed my CD4 was 511 and Vl 47000...not bad numbers. Within 3 months of initiating treatment I was undetectable and continue to be. My Vl is over 1200.
I had side effects for the first 2 weeks...loopiness, anxiety, just feelin unwell...after that nothing. I have never missed a dose and take it anytime from 11Pm - 2AM, sometimes even with food...No side effects.
My doc still thinks its the gold standard in treatment and still thinks Atripla outperforms even the newest meds. He cites the superior half life of the sustiva which makes timing very forgiving. Even the FOTO study (five days on 2 days off) showed no decrease in effectiveness when weeklends are missed. The new drugs do not have the same half life.
He was concerned about Stribild because it has a booster (comicstat) that may amplify any kidney problems caused by the tenofovir.
Complera is not recommended for those who begin with a high viral load and Isentress must be taken twice daily and has a much shorter half life.
I will stay on Atripla until something much better comes along or better till we have a cure!
Title: Re: The Sustiva/Atripla Thread
Post by: sanitex on April 17, 2013, 11:23:44 am


Can changing of new drug like viramune / Truvada bring down our
big belly to normal size or even other new drugs.
Title: Re: The Sustiva/Atripla Thread
Post by: buginme2 on April 17, 2013, 12:43:45 pm

Can changing of new drug like viramune / Truvada bring down our
big belly to normal size or even other new drugs.

Viramune is not a newer drug.  It's actually two years older than Sustiva. 

Are you taking Sustiva?  What are you pairing it with?  If your pairing it with an older nuke combo like Comivir then a change to Truvada/Sustiva may help.
Title: Re: The Sustiva/Atripla Thread
Post by: sanitex on April 17, 2013, 07:10:28 pm



I was in sustiva/Truvada before changed to three in
one drug (Atripla ) seven months ago.
Now planning to change viramune / Truvada due to
CNS .before my anxiety was less but now it's terrible.
Title: Re: The Sustiva/Atripla Thread
Post by: sydneyson31 on May 05, 2013, 01:30:03 am
Hi again! I wanted to drop in and post a quick update on my situation. I first posted on 25 March when I switched from Atripla to Complera due to ongoing psych and depression issues. 6 weeks later and I do feel better, although not completely like others have mentioned. I don't seem to have experienced any adverse side-effects apart from being very gassy but as it's just me and the pooch, doing noisy farts doesn't seem to bother either of us but i am learning more about what in my diet may exacerbate this too.

The Atripla made me extremely unsocial over the last 4 years, and my circle of friends has decreased significantly. To be honest, I was not good company and they just stopped inviting me places or calling. As you can imagine this also greatly affected my state of mind and insecurities and really, everything just got worse and worse.

In just 6 short weeks, I am getting out and about more, interacting with friends again over dinner and I even have a date this week! They are slow but important steps to getting my life back.

As I get more used to the Complera and further away from the Atripla, I am so angry at my previous doctor for ignoring my pleas to change meds but am so thankful that my new doctor acted swiftly to make the changes that were necessary.

My advice to others is that if you don't feel "right", push the issue with your doctors so that they listen and take your concerns seriously. Yes, Atripla works fantastically well to control HIV but it doesn't need to be at the expense of your sanity or relationships. There are other viable options for most, if not all of us that are struggling with the mental affects of Atripla (and HIV).

Good luck to you all and thank you for fearlessly sharing your own stories and experiences here.
Title: Re: The Sustiva/Atripla Thread
Post by: frenchie on May 05, 2013, 08:31:52 am
hi every one, i was diagnosed 14 month ago, at first I was desperate and i had found a lot of help reading post on forums from different people living with the same health condition.

So i decide i could contribute with my small experience .


When i started medication my viral load was about 200 000, and atripla was the only single tablet regimen available in my country.

As i had at the beginning a lot of side effects (i was very depressed: just been diagnosed, and my girlfriend who i was suppose to married, dump me in a very very rude way), i thought it was all coming from the sustiva from atripla, so i wanted to switch to complera.

 i took another health insurance in a different country where complera was available and then switch to this one (my viral load at this time was not detectable thanks to atripla).

And the side effects was even worse (i still had insomnia , a lot of stomach problems, and being very depressed), i kept complera for a month or two but the side effects didn t go away.

So i went back to atripla and nowadays the only problem i have is sometimes a sleeping disorder, but nothing to bad, so i keep this medication.

I still have a lot of vivid dreams but it doesn't really bother me.

I think the depressive moods i had when i started atripla when more due to the fact of being newly diagnosed, problems with my ex partner and facing my new HIV status on my own (which might not have been my brightest idea).

We are not all equal with medication, atripla can work very well with some people and can't with other.
And there is are some practical advantage of taking this regimen (taking just one pill before you go to bed, with window in time of a few hours).


Ps: please forgive the many mistakes i have probably made, but english is not my native language




Title: Re: The Sustiva/Atripla Thread
Post by: PAGuy on May 09, 2013, 08:32:56 pm
After being diagnosed last year, I was immediately put on atripla.   I immediately started to suffer depression and anxiety and sleeplessness.   The vivid dreams, while they may sound like fun at first, after a whole year of them, I am making the switch to complera.

I also wouldn't recommend sustiva for anyone with depression or anxiety issues...after one week on atripla, I attempted suicide and ended up in the psych ward for a week and then a subacute psychiatric center for two weeks.  I had never had any suicidal ideations prior to that week, just one mild depression.

My ID doctor recommended the switch about six months ago...but I was hesitant because I went from cd4 of 49 to 298 and vl from 2 million to UD in 8 weeks.  Put those fun vivid dreams just got worse and worse...and waking up was always frightening...the dreams would always wake me up...oddly they all took place in college with me not being able to graduate....ironically in real life I have a doctorate.

The eating thing also freaked me out because of the empty stomach requirements of atripla...but hey...now I can have a snack after dinner.

Anyway, let me stop rambling and thank everyone for this tread...and hope for the best with my switch!
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on May 09, 2013, 09:46:18 pm
After being diagnosed last year, I was immediately put on atripla.   I immediately started to suffer depression and anxiety and sleeplessness.   The vivid dreams, while they may sound like fun at first, after a whole year of them, I am making the switch to complera.

I also wouldn't recommend sustiva for anyone with depression or anxiety issues...after one week on atripla, I attempted suicide and ended up in the psych ward for a week and then a subacute psychiatric center for two weeks.  I had never had any suicidal ideations prior to that week, just one mild depression.

My ID doctor recommended the switch about six months ago...but I was hesitant because I went from cd4 of 49 to 298 and vl from 2 million to UD in 8 weeks.  Put those fun vivid dreams just got worse and worse...and waking up was always frightening...the dreams would always wake me up...oddly they all took place in college with me not being able to graduate....ironically in real life I have a doctorate.

The eating thing also freaked me out because of the empty stomach requirements of atripla...but hey...now I can have a snack after dinner.

Anyway, let me stop rambling and thank everyone for this tread...and hope for the best with my switch!

Thanks for such a honest post with your experience about Atripla.
(I am always hesitant to add to this thread but we are just trying to share here)

I noticed yet another plus side today after having changed meds.
I like to read but the last several years I would zonk out after 15-30 minutes and need a nap.
It's been a bit hectic the past couple of months but I picked up a book today and read for 1 1/2 hours and NO nap afterwards! :)

Simple pleasure. :)

PAGuy,
Hope all goes well with you new meds!
Title: Re: The Sustiva/Atripla Thread
Post by: PAGuy on May 10, 2013, 07:28:31 pm
You are welcome Mitch...you know...I was quite the avid reader prior to my diagnosis...sometimes 2 books a week...I have not read one book since...and I am just starting to enjoy tv again.  Perhaps I will be picking up my kindle again in a short time...fingers crossed.

 My straight roommate commented today that I seemed "brighter"...he didnt meant smarter...but more 'up'.   And to be honest...I woke up this morning with a tiny bit of anxiety..but felt good...but that could be because of it being Friday!   Who knows?   I will attribute it to the switch!

Hope our journeys continue on this path :)
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on May 10, 2013, 07:55:44 pm
You are welcome Mitch...you know...I was quite the avid reader prior to my diagnosis...sometimes 2 books a week...I have not read one book since...and I am just starting to enjoy tv again.  Perhaps I will be picking up my kindle again in a short time...fingers crossed.

Hope you are able to pick up your Kindle soon.
Reading as little as book or two a month can help take anxiety away.



 My straight roommate commented today that I seemed "brighter"...he didnt meant smarter...but more 'up'.   And to be honest...I woke up this morning with a tiny bit of anxiety..but felt good...but that could be because of it being Friday!   Who knows?   I will attribute it to the switch!

Hope our journeys continue on this path :)

Sounds like you had a nice day.
Good to hear your roommate noticed. :)
Title: Re: The Sustiva/Atripla Thread
Post by: frdfandc on May 28, 2013, 12:18:01 am
I have been on Atripla since March of 2011. At first I had a hard time sleeping, but I think this was due to other issues - mainly pneumonia.

I have night sweats occasionally, but I've always get warm very easily at night, so I don't think the meds have any cause to that. The only thing I have been having trouble with is fatigue the past couple of months. Not sure if it's due to the Atripla or if it's another issue.

As for my general health, I am healthier than I have been. Mainly because I have been cycling 2-4 times per week and trying to eat better. Now if I can just stop drinking so much Pepsi, then I will be really making some headway. Been maintaining a steady weight of 188 lbs, after loosing 10 lbs, then putting it back on after starting back up cycling (muscle) after a bad winter streak.
I go see my primary care physician this coming Thursday and I am going to inquire about it. Hopefully it's something simple.
Title: Re: The Sustiva/Atripla Thread
Post by: PozGuy212 on May 28, 2013, 06:57:36 pm
To each his own, but I started my first regimen on Atripla and quit after 3 intense days on it then switched to Complera.

I would take it when I got off of work (around 3/4pm), feel dizzy a half hour to hour later (after or during commuting home), have an LSD-like trip, become emotional and sad at stupid things, have deep philosophical thoughts on things that are not even that deep, feel nauseous, have nightmares and confusing dreams that made absolutely no sense like being to murdered then suddenly seeing African tribal men dancing leading me to wake up in night sweats. Then I would "come down" right before work again in the morning. It was absolutely crazy.

My doctor even prescribed me things for the side effects which within itself I thought was crazy to me. I ran into my doctor's office almost crying because I couldn't handle it. No Sustiva or Atripla for me ever.
Title: Re: The Sustiva/Atripla Thread
Post by: allsmiles on June 12, 2013, 08:22:01 am
Hello all I am new here. I have been on Atripla for about 5 years (I was on Videx Epivir and Sustiva separately for quite a few years before that) Thankfully both combos have kept me healthy and UD for the past 10+ years.

Now the more I read about Atripla (Sustiva) here I am convinced that it is part of my issues and i'm wondering if I should switch. Although I am terribly afraid of switching and it causing resistance.

I have been dealing with cognitive problems for at least the past 5 years and although i'm living just fine I wonder if they would go away if I switched. Sometimes it feels like my brain is wrapped up in something or is bloated and I get slight headaches and humming ringing in my ears. Sometimes it feels "foggy" as some people say and it's hard to think straight. Sometimes I feel like its not even there lol I find myself stuttering or trying to say something and it won't/can't come out for a couple second delay. I sometimes can remember things other times forget it. And any kind of stressful situation makes my head a mess. Sleep has no routine sometimes I'll lay up all night other nights i'll sleep and wake up tired.

I've read about Complera on this site under drugs and it blatantly states that studies show higher risk of failure compared to Atripla... And Striblid is "comparable" but very new.. I don't want to go back on a multiple pill regimine until I really need to so I would switch to either of those if I were to at all. Does anyone have any suggestions? I don't want to risk my health and life by switching and then a year later I rebound and need to switch again.. Thank you all...
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on June 12, 2013, 08:44:14 am
Although I am terribly afraid of switching and it causing resistance.

You don't obtain resistance issues when you switch from one regimen to another. Your fear is not based on clinical experience so please put it aside as any consideration of what options you have.

As far as your other issues with "brain foggy-ness" you will not know if the sustiva component of your current regimen is causing this or not unless you switch. So make the switch, and if it does not dissipate within a couple of months then go to your doctor and discuss what next steps to take.

At any rate it seems obvious to me you should try another non-sustiva based regimen, and in fact should have done so some time ago.

As far as basing your regimen decisions on whether you have one pill in your hand yet feel crazy in the head every day because of that, versus taking three pills a day and feeling 100% better -- sorry, but I don't ever understand patients who have an issue with this. But it's your life and your decision so if that's really important to you then go with Stribild.

Additionally, if you live in the US there is a new drug called dolutegravir that has an expected FDA approval date for August, and results in the clinical trial have been stellar. Soon thereafter this medication will be used in a new all-in-one pill containing dolutegravir/abacavir/lamivudine, and that is currently in phase 3 testing. So if you don't like Stribild after a period of time you can then switch to this new option by then. And again, changing regimens under a HIV clinician's supervision does not cause resistance issues. (Where do people get this idea from? Don't you discuss such things with your doctor?)
Title: Re: The Sustiva/Atripla Thread
Post by: Schnauzer on June 26, 2013, 02:51:36 am
I'm very happy that I found this forum.  I began taking Atripla in March 2008 after I was diagnosed with HIV/AIDS.  At that time I had Pneumocystis carinii pneumonia (PCP), a vl of 180,000 and tc of 45.  Atripla truly brought me back to life. In just a short time my viral load was ud and my tc was climbing.  The side effects of strangely vivid dreams (when I could sleep), insomnia, fatigue, "fuzzy brain", gradual memory loss, dwindling ambition, mood swings, etc., seemed the price to pay for regaining my health.  My doctor at the time thought that Sustiva was a great drug and told me that I'd likely be on it for a very, very long time.
A few months ago, I moved to a different city and got a new ID doctor.  In regards to my depression, high lipids, anxiety, insomnia, et.al., my new ID doctor suggested a new therapy -either Complera or Stribild.  I was shocked!  My little friend Atripla had been with my for five years and done what it was supposed to do.  The new doctor explained that several of his patients had made the switch away from efavirenz and that the switch was transformative. 
One month ago I started on Stribild.  Within a couple of weeks I started feeling like the guy I once was: playful, curious, friendly, eager to try new things and meet new people. The darkness and the feelings of insecurity that filled my days had slowly lifted away.
Time will tell if the absence of Efavirenz is really the cause of my elevated mood or if I'm simply enjoying a happy period that has nothing to do with antiretrovirals.  At the moment, though, I'm hoping I never have to go back to Atripla. It really seems to have done a number on me.
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on June 26, 2013, 07:32:34 am

One month ago I started on Stribild.  Within a couple of weeks I started feeling like the guy I once was: playful, curious, friendly, eager to try new things and meet new people. The darkness and the feelings of insecurity that filled my days had slowly lifted away.
Time will tell if the absence of Efavirenz is really the cause of my elevated mood or if I'm simply enjoying a happy period that has nothing to do with antiretrovirals.  At the moment, though, I'm hoping I never have to go back to Atripla. It really seems to have done a number on me.

Welcome to the forums Schnauzer!
Glad you found us!
My guess is that this new/old "elevated mood" is NOT temporary. It is also nice to hear that your new doc is aware of what Sustiva can do. :)
It almost felt like a rebirth in a way when I changed meds.
m.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on June 26, 2013, 07:36:21 am
Welcome to the forum Schnauzer . Thanks for sharing your story , one of the reasons I started this thread was because I was one of the ones who's switch off of Atripla was transformative . I hope that the changes your seeing are here to stay , I would think that it was the drug and happy is your new normal . I look forward to hearing more from you so stick around . 

Title: Re: The Sustiva/Atripla Thread
Post by: atripla_2013 on June 27, 2013, 10:58:45 am
Dear friends,

Thank you so much for your very valuable experience-sharing about using drug. I learn a lot from your sharing.

1. I would hope we are going to share more medication researchs, papers, documents more about the effectiveness of each kind of drugs. The numbers, the research result  which is tested with the enough sample of drug-users will made all of us beleive in and find out the best way to follow. Better than using our own sense, I guess :)

2. I think the decision to choose the drugs type is basically based on the physical health condition (age, history of illness, gene...) and metal condition (strengh of mind, type of metal feeling...) of each individual. And this decision is made by our doctors (not my ourself).

3. I think the effectiveness of a drug is confirmed respectively in order: (1) Control Virus load for long time to protect physical health as long as possible (2) less side-effect as much as possible (3) Prolong the life-time as long as possible...

In conclusion, I would hope we could share together the research result (medical journal) about 3 types of the one-dose combination drug we are discussing now.

I. Atripla (efavirenz 600 mg +FTC 200 mg + tenofovir 300 mg)
II. Eviplera (rilpivirine 25 mg +FTC 200 mg + tenofovir 300 mg)
III. Stribild (Quad) (elvitegravir 150 mg + cobicistat 150 mg +FTC 200 mg + tenofovir 300 mg)
Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on September 03, 2013, 03:50:56 pm
Diagnosed in 2002 and on Atripla since July of 2006 - and aside from the initial vivid dreams and the occassional "loopy" feeling for the first six months or so, I've been largely problem free.  Until recently and I'm not certain if this is manifestations that occur after prolonged usage or if this is just "Me".  I continually say that I'm in great shape for the shape I'm in - but this has me somewhat concerned. 

Over the course of the last six months depression has set in and there is really no problematic issues that would have created this. I've been in a secure relationship for 13 years, great job, insurance, etc.  There is no reason that these overwhelming spasms of depression should hit - but they do - and the result is reckless behaviors, mood swings, lethargy and a complete change in personality.  I would like to chalk it up to the Atripla, but just don't know that this would suddenly 'pop up' after seven years of medication.  No, I have not brought this up to my doctor. My counts are good, my labs are excellent and I am in great shape - I figure that things could be worse and I'm lucky. 

The other issue that has come up that I don't see anything on are these very sporadic dizzy spells. They last anywhere from five to ten seconds and their frequency can be as little as once every two weeks.  Completely debiliating for their duration, it feels as if my eyes are crossing and vertigo sets in....then as quick as it comes, it vanishes and I'm fine. No feelings of nausea or disorientation - it's back to business as usual.

I've had an MRI and it showed nothing abnormal. A scan did produce some puzzling activity that was 'abnormal' but I haven't been able to follow up with the 7 days worth of monitoring with the head contraption that records your brain waves. I suppose that I figure if there isn't a tumor then leave well enough alone. I've brought it up to my HIV doctor and he is perplexed, too and doesn't think it is attributable to the Atripla.

Most of my friends that I have are HIV positive and I seem to be one of the few still on Atripla (as is my b/f), so I don't have much to compare my experiences to.  The b/f has no issues other than bathroom habits. 

Is there a greater occurrence of depression the longer you are on Atripla???
Title: Re: The Sustiva/Atripla Thread
Post by: wolfter on September 03, 2013, 04:29:18 pm




Interestingly, my doc did NOT suggest Sustiva -- he was pushing me toward Kaletra, but with my family cardiac history I told him "absolutely not".  He listened and when I said Sustiva, he went along.  I was definitely unequivocal in my stance on Kaletra and he never pushed.  So -- I think it is important to be clear and direct.

So -- there is my personal input.

Mike

Sometimes I love revived threads as I usually missed something important due to my brain fade.   :o  The Summer of 2001, shortly after my 26th fine, 36th birthday I had my first heart attack.  I was on kaletra and Combivir and I guess I didn't realize there was the potential issue.  I was still on that combo when I had my second one a few years later. 

I guess I might have dodged another bullet by deciding to stop all meds after Bill's death?  Being severely depressed might saved my life.  lol

On an irrelevant side note, I had my first myocardial infarction on a Friday and did nothing about until til Monday morning.  I showed up to work and my boss was like hell no, you're going to the ER.  She made a co-worker drive me.  After revealing that my heart enzyme test came back positive, he inquired what HIV meds I was on.  He did this right in front of my coworker.  Perhaps if I hadn't been so freaked out by that, I could have had an intelligent discussion with him.
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on September 03, 2013, 05:08:43 pm
Diagnosed in 2002 and on Atripla since July of 2006 - and aside from the initial vivid dreams and the occassional "loopy" feeling for the first six months or so, I've been largely problem free.  Until recently and I'm not certain if this is manifestations that occur after prolonged usage or if this is just "Me".  I continually say that I'm in great shape for the shape I'm in - but this has me somewhat concerned. 

Over the course of the last six months depression has set in and there is really no problematic issues that would have created this. I've been in a secure relationship for 13 years, great job, insurance, etc.  There is no reason that these overwhelming spasms of depression should hit - but they do - and the result is reckless behaviors, mood swings, lethargy and a complete change in personality.  I would like to chalk it up to the Atripla, but just don't know that this would suddenly 'pop up' after seven years of medication.  No, I have not brought this up to my doctor. My counts are good, my labs are excellent and I am in great shape - I figure that things could be worse and I'm lucky. 

The other issue that has come up that I don't see anything on are these very sporadic dizzy spells. They last anywhere from five to ten seconds and their frequency can be as little as once every two weeks.  Completely debiliating for their duration, it feels as if my eyes are crossing and vertigo sets in....then as quick as it comes, it vanishes and I'm fine. No feelings of nausea or disorientation - it's back to business as usual.

I've had an MRI and it showed nothing abnormal. A scan did produce some puzzling activity that was 'abnormal' but I haven't been able to follow up with the 7 days worth of monitoring with the head contraption that records your brain waves. I suppose that I figure if there isn't a tumor then leave well enough alone. I've brought it up to my HIV doctor and he is perplexed, too and doesn't think it is attributable to the Atripla.

Most of my friends that I have are HIV positive and I seem to be one of the few still on Atripla (as is my b/f), so I don't have much to compare my experiences to.  The b/f has no issues other than bathroom habits. 

Is there a greater occurrence of depression the longer you are on Atripla???

Hi Dano and welcome to the forums!

Many parts of what you wrote struck home with me. Specifically, the depression for unknown reasons, mood swings, and lethargy. Another major symptom of mine was the loss of clarity of thought.

My counts are good and were actually at their best when I switched meds so I know what you mean when you say "It could be worse and I'm lucky". Well, I suppose it could be worse but I wouldn't discount what you are going through.

I can't address the dizzy spells while on Atripla but I do get them on occasion now. Pretty minor for me. Not sure if they could be related or not to Atripla in your case.

Anyway, I hope you have read this whole thread to give you a wider scope of others experiences. Symptoms are difficult to figure out sometimes as to exactly what causes them but I will add that I have never regretted my decision to make the change. I feel like I have a part of my life back that had slowly faded away. For me, Atripla was the reason. I also think the length of time on it can play a role but that's just my opinion. I love my ID doc but it took a bit of convincing on my part to get him to agree. Now he seems genuinely happy for me and understands the change was right for me.

My stats if it matters:
30+ years poz.
On Atripla (or equivalent separated meds) since around 2001 (I think).
CD4 count was around 900 and VL was UD at the time of my med change. (still pretty much the same now)
Switched to Truvada and Isentress in March of this year.

Hope this is of some help and looking forward to hearing more from you. There are lots of people here with wisdom and support. :)

m.

Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on September 03, 2013, 06:39:16 pm
Thanks! 

I guess I would like to know if the 'funk' is related to the pills or something else.  The end result is not that bad.....I'm chalking it up to a pre-mid-life crisis and doing all the proveribal things one would do to eliminate that:  sports car, gym membership, hair color.  I may be a bit depressed but I'll look damn good!   ;D

From what my friends say about Atripla - those few that are still on it and those that were, the most significant issues they experienced were the dreams. Personally, I found it more amusing than horrifying. I heard the stories of zombies, violence and terrors.  I suppose I was lucky.  I would have Phyllis Diller or Ma Kettle. 

Next appointment in six months - we'll see if the gym membership does the trick! 
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on September 03, 2013, 07:51:07 pm
Thanks! 

I guess I would like to know if the 'funk' is related to the pills or something else.  The end result is not that bad.....I'm chalking it up to a pre-mid-life crisis and doing all the proveribal things one would do to eliminate that:  sports car, gym membership, hair color.  I may be a bit depressed but I'll look damn good!   ;D

From what my friends say about Atripla - those few that are still on it and those that were, the most significant issues they experienced were the dreams. Personally, I found it more amusing than horrifying. I heard the stories of zombies, violence and terrors.  I suppose I was lucky.  I would have Phyllis Diller or Ma Kettle. 

Next appointment in six months - we'll see if the gym membership does the trick!

I guess it would depend on your definition of "funk". I thought my "funky" brain was changing my life and it sounds like it may be for you too? I'm 54 and the hair color change went out the window last year. lol. I bought a fancy car (not so sporty) last summer too to appease myself and knowing that it will probably be the last car for me (I only put on 6,000 miles per year). Never have been a guy for the gym but that's another story. ::)

The dreams were more amusing to me too.

I don't profess to have all the answers but I'm still wondering if you have read this whole thread and if you can relate to what others have said.

I am obviously not a fan of Atripla. (Sustiva in particular)

m.
Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on September 03, 2013, 08:17:41 pm
I have read through it. I would rather know why something is happening than listen to a doctor say 'it might be' this or that. I like the easy answers. Either it IS or it ISN'T the pills. Looks liken that's not such an easy process and while there are alternatives, this seems to work and the other meds may not help, may make it worse or could even produce different effects, from what I've read. So, I guess it's the Devil you know.....
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on September 03, 2013, 08:23:40 pm
Hi Dano ... I was on Atripla for a long while before the worst of the side effects began for me . My doctors insisted that late onset symptoms were not really anything to seriously consider so it took me awhile to get a med change . The relief I felt was sudden and dramatic once I insisted .  I'm on Intelence / Truvada and couldn't be happier with the change .

Best of luck and welcome to the forums .
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on September 03, 2013, 08:28:45 pm
I have read through it. I would rather know why something is happening than listen to a doctor say 'it might be' this or that. I like the easy answers. Either it IS or it ISN'T the pills. Looks liken that's not such an easy process and while there are alternatives, this seems to work and the other meds may not help, may make it worse or could even produce different effects, from what I've read. So, I guess it's the Devil you know.....

It's your decision. Sometimes answers are not easy. Unless your doc is taking these meds him/herself they will never know what YOU are experiencing in a direct way. Sometimes the devil you know is a devil, period.
There are many good meds as an alternative for most (not all) of us.

I'm not trying by any means to convince you or change your mind. Just telling you of my experience. I wish you well!! :)

m.
Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on September 03, 2013, 08:52:59 pm
Hi Dano ... I was on Atripla for a long while before the worst of the side effects began for me . My doctors insisted that late onset symptoms were not really anything to seriously consider so it took me awhile to get a med change . The relief I felt was sudden and dramatic once I insisted .  I'm on Intelence / Truvada and couldn't be happier with the change .

Best of luck and welcome to the forums .


THANK YOU! I thought I was imagining it at best and being paranoid at worst. No one seems to believe that after all these years things just aren't firing on all cylinders. Of all the people I spoke to they all said their effects were fairly soon after starting....and anyone on it for over six years just looked at me like I was CRAZY!! I'm going to hope its the mid-life crisis band see how it's going in six months, look for long-term usage studies (difficult to find) and be a little more direct with the doc if it don't shape up. Thanks again.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on September 03, 2013, 09:17:44 pm
I doubted myself for the last two years before I made the switch thinking it wasn't likely that a drug had worked well for so long could be responsible for some of the mounting symptoms I was having . Its your call but I honestly felt that because we have so many good meds to choose from and in the end I could always go back to Artipla if I wanted to that I had much more to gain by trying a different combo than to loose . 
Title: Re: The Sustiva/Atripla Thread
Post by: Azrael2012 on September 03, 2013, 11:13:48 pm
Hey Everyone....I went back on Atripla a few months ago....after switching from it to Complera, (had some bad complications on that) and then to Issentress and Truvada, (more complications) and switched back.....all my numbers have remained good.
VL is still UD and CD4 is up to 1054....my Insomnia has returned with a vengeance tho and Im trying hard not to take my Zopliclone or Temazepam unless Im really climbing the walls.
The interactions of these with my Epilepsy meds can leave me exhausted and zombie like the following day.  :-\  so if anyone can tolerate the Atripla and get passed the crazy dreams and "trippy" feeling it does work well.
Im lucky as my ID consultant is happy to let me make a switch as he said "its you who has to bear the effects of these meds not me" but he isnt one for just writing a script for meds without proper discussion.
Im currently dealing with a ANOTHER staph infection, 4th this year and Im fed up with that as I dont want it to become MRSA. I will know in 2 wks if the swabs reveal it is.
Just at the end of my Fluoxicillan anti'bs and am fed up showering 3 times a day as the itching and crater like holes in my head and back are driving me crazy.
Fingers crossed they will clear soon.

Rob
Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on September 26, 2013, 08:09:51 pm
Thanks for starting this thread, Jeff. I have talked about my experiences at length before, but not sure whether I have written them out at length. Here goes:


I started Sustiva as part of a cocktail in the fall of 1998 right after it was approved. The doctor I saw was a very well respected doctor. I was actually shocked that he accepted Medicare, as his office was VERY upscale and so, it seemed, were his clientelle.

It was a far cry from the clinic I was in before, which was a state-run IDC. It was not unusual there to be sitting in the waiting room reading my book next to a row of handcuffed prisoners, some of whom would start fights. The staff were mostly med students doing internships, nurse practitioners, and a few doctors fresh out of med school, and there was only one ID specialist who oversaw everything. Not an optimal place, and when I started getting some serious illnesses, I found what I hoped was a better choice. It was, at least for a bit.

I trusted the man, who had a nice if brusque demeanor and seemed to listen to my issues.

At first, the only side effects were vivid dreams. I have always had them, but these were epic. I actually remember the plot of a two-part Star Trek: Voyager dream. It was a two-parter since I had to get up in the middle of it to pee. I swear that Majel Barrett-Roddenberry actually announced "Last time on Star Trek:Voyager" when I laid back down, and did a fifteen second recap of the dream before finishing the episode.

I was really happy about that.

I was actually happy about a lot of stuff. Family was healthy, my outreach organization was still limping along, had a boyfriend and a couple of ferrets. Though I have had a history with major depressive disorder, I was doing well on a low dose of Welbutrin, and at 32, was in the best shape of my life.

After about three months on Sustiva, the dark thoughts started creeping in. Not all at once, not quickly to be sure*. But from out of nowhere, literally nowhere, I would start thinking about suicide. It was terrifying because intellectually, I was aware that it was an irrational thought. I had no REASON to be depressed - there was no SITUATIONAL catalyst. Something was seriously fucking with my brain.

I told my doctor. He dismissed my mental health issues as, in his way of thinking, they had little to do with HIV or my meds. He upped my dose of Wellbutrin until I was anxious all the time, and sent me on my way.

This was before AIDSMEDS. And I wasn't really a 'support group" guy. The support groups I had gone to in the early 90s were death marches, plain and simple.

But I went to one, a support group that happened to be next to and connected with an HIV clinic. I started going. And started listening to the people there. Even though it had been seriously downplayed from the list warnings and contraindications, the threat of severe, debilitating depression, hallucinations, psychosis, and suicidal ideation related directly to Sustiva was more than evident.

Realize that this was 1999, HAART had only been out for three years. People were still dying, and those who weren't were being transformed into ghoulish funhouse-mirror reflections of their former selves. Of course people were committing suicide. Add onto that the rate of new infections, with newly diagnosed people thinking that this was their future. Unlike today, when HIV seems to be marketed as a mild inconvenience to most, people who were getting infected HAD seen the horror and the suffering. The number of people with underlying major depressive disorder becoming infected was, I submit, higher than it is today.

But I went to the group, and found that others had endured the same experiences as myself. I was, and am, a severe skeptic regarding anecdotal evidence. So I sharpened my scientific skills, acquired a physician's medical license number to log into restricted (from the public) scientific studies and peruse them myself. Aegis.org was only a dream at this point, and the CDC was of little use when it came to referencing things that weren't behind a paywall.

After a crash course in statistics and data interpretation, I was shocked to see how deep the rabbit hole went. Suicide rates leapt for HIV patients on Sustiva, and almost to a person they were blamed on pre-existing depression despite the common knowledge that Sustiva's greatest triumph was it's ability to transcend the blood-brain barrier.

I continued my research, of course. But I also bought a copy of "Final Exit" and prepared to kill myself.

My doctor, and frankly the entire medical paradigm at the time, had convinced me that the results of the medications in bloodwork in suppressing viral load and allowing the rebuilding of my immune system were worth the side effects.

Except that I was going to kill myself, which would not have reflected kindly in my bloodwork. Though in all fairness, it would have stopped the virus in my body.

Not sure what managed to get through to me, but one day, instead of driving my car full speed into an underpass column, I went instead to the infectious disease clinic next to the support group, filled out the paperwork, fired my doctor over the phone (when I called to request a transfer of records) and quit Sustiva.

The depression, the suicidal thoughts, all went away in a matter of weeks. I tapered off and eventually quit the Welbutrin, and felt that I had dodged a semi-literal bullet.

I try REALLY hard not to prosthelytize when it comes to Atripla/Sustiva. It's terrific at suppressing viral loads and encouraging immune repair. It does great work at attacking HIV in the CNS. And when it works, it works almost seamlessly it appears.

But when it doesn't, it is a dangerous and deadly drug. I thoroughly agree with Jeff that we will come to a place where enough alternatives exist (that do the same thing as well or better) without the accompanying possibility of severe CNS disruption that Sustiva/Atripla, like many drugs before it, will no longer be prescribed often if at all.



TL;DR - Sustiva fucked my shit up. Would recommend only with all the caution in the world, and even then alongside therapy for at least a year to watch for slow-developing psychosis and suicidal ideations.





I just recently joined the board and the reason was to look for validation of EXACTLY what you stated. I literally thought I was losing my mind and was fairly convinced that after being on Atripla since 10/2006 that these issues wouldn't take this long to manifest and that they certainly couldn't be related. I haven't been able to read through the posts with much regularity and just came across this tonight again and read it all and not just search snippets.....this afternoon (after some insightful help from Jeff G) I have my ID switching me to Stribild early next week. He's a great doctor but seems to be more in tune with my physical well being than my mental train wreck that I've become.

I really truly thought that these episodes were my new normal at best and at worst, that I've been here long enough. I don't want to be melodramatic but with the frequency and intensity of these episodes gaining steam I just don't know what place I would be down the road if not for this group. For the first time in many months, I'm actually hopeful and for that, I thank you all!
Title: Re: The Sustiva/Atripla Thread
Post by: elf on September 28, 2013, 03:56:35 pm
A Systematic Review of the Psychiatric Side-Effects of Efavirenz
http://libgen.org/scimag/get.php?doi=10.1007%2Fs10461-011-9939-5

Changes in sleep quality and brain wave patterns following initiation of an efavirenz-containing triple antiretroviral regimen
http://libgen.org/scimag/get.php?doi=10.1111%2Fj.1468-1293.2006.00363.x

Dream changes following initiation of efavirenz treatment
http://libgen.org/scimag/get.php?doi=10.1016%2Fj.medcli.2010.06.011

Impact of pharmacogenetics on CNS side effects related to efavirenz
http://libgen.org/scimag/get.php?doi=10.2217%2Fpgs.13.111

Efavirenz and chronic neuropsychiatric symptoms: a cross-sectional case control study.
http://libgen.org/scimag/get.php?doi=10.1111%2Fj.1468-1293.2006.00419.x

Changes in sleep quality and brain wave patterns following initiation of an efavirenz-containing triple antiretroviral regimen
http://booksc.org/dl/9594842/4f5dcc

Long-term impact of efavirenz on neuropsychological performance and symptoms in HIV-infected individuals (ACTG 5097s)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958039/

Prediction of neuropsychiatric adverse events associated with long-term efavirenz therapy, using plasma drug level monitoring.
http://cid.oxfordjournals.org/content/41/11/1648.long


Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on October 01, 2013, 12:51:29 pm
Interesting links - thank you!

I've been seeing my ID since 2002 and when he prescribed Atripla in 2006, he never really discussed any of the potential side effects. Of course, back then it was new and the wonder drug. I was one of the first people on it and I've never really known any other meds since then. From that time until I made the call to him, no questions other than, "how are you feeling?  Your labs are great!"

The sporadic side effects that I brought to him were never linked with this drug.  He would send me to a specialist for the dizzy spells, an MRI for the Tinnitus. When I finally did request the change, his response was, "Yeah, I'm switching a lot of my patients due to the side effects...."  Really?  Was I on some list that he would eventually get to me?  I can't really blame him fully since I should have disclosed more to him.  The main issue is these tiny progressions in side effects were in inches and I never really knew how badly it had become until you're staring down at rock bottom!

It has been five days since I switched from Atripla to Stribild and I feel phenomenal! 

* No dizzy spells - where they were occuring with a near daily frequency which would last 15 or 20 seconds.  An MRI revealed nothing but a scan did reveal some abnormal brain wave activity.  Of course, running around with a contraption on your head for a week to measure wasn't in the cards so I'm going to chalk this up as a side-effect, too!
* No sporadic, intense bouts of depression with thoughts that .... well.... I can't even begin to explain the feeling. This was the big one and if not for this I probably would have suffered through the Atripla thinking all the other symptoms were simply getting over 40.
* Tinnitus has reduced by at least 50% and today is the best it has been since I can recall.
* I swear my vision is slightly better!
* I know I can think clearer and concentrate better at work.
* No noticeable side effects other than a little less sleep!

Each day, I feel a better response to the switch and while it will eventually plateau, I know that I'll be in a much better place when that time comes! 

Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on October 01, 2013, 12:59:24 pm
I love that update Dano .  :) .
Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on October 07, 2013, 05:20:54 pm

My doc still thinks its the gold standard in treatment and still thinks Atripla outperforms even the newest meds. He cites the superior half life of the sustiva which makes timing very forgiving. Even the FOTO study (five days on 2 days off) showed no decrease in effectiveness when weeklends are missed. The new drugs do not have the same half life.

He was concerned about Stribild because it has a booster (comicstat) that may amplify any kidney problems caused by the tenofovir.

Complera is not recommended for those who begin with a high viral load and Isentress must be taken twice daily and has a much shorter half life.


Perhaps someone here can enlighten me on the "half-life" of meds and what impact this would have in switching from Atripla to Stribald?  I am the first to say that I am remiss in doing my due diligence with medications, information, etc., I try to keep up as I can but apparently fall short! This is the first time that I've heard of this.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on October 07, 2013, 05:26:33 pm
Atripla stays in your system a long time , some other drugs , not so much .

The half-life is the amount of time necessary for the concentration of the drug in the bloodstream of the body to be reduced by one-half. The time it will take for a drug to reach a steady state, or full effectiveness, in the system is based on that half-life.
Title: Re: The Sustiva/Atripla Thread
Post by: newt on October 11, 2013, 05:26:43 pm
Given efavirenz seems to increase your risk of suicide by a factor of 2.5, should it remain a preferred choice for 1st time treatment?

http://www.aidsmap.com/Does-efavirenz-use-raise-the-risk-of-suicide-in-people-with-HIV/page/2775761/ (http://www.aidsmap.com/Does-efavirenz-use-raise-the-risk-of-suicide-in-people-with-HIV/page/2775761/)

- matt
Title: Re: The Sustiva/Atripla Thread
Post by: mitch777 on October 11, 2013, 06:05:28 pm
Thanks Newt for the info.

The evidence is mounting over time. Many of us here have told of our experiences with efavirenz/Sustiva/Atripla. It seems that study after study have shown many side effects yet some prefer to stick with it simply based on VL and CD4 counts. Your post was just a sample of what can occur.

I have said it before and will continue to believe that long term use of this med does more harm in the long term than most realize.

I truly hope people read this thread and know that other options are better.

 
Title: Re: The Sustiva/Atripla Thread
Post by: jam77 on October 15, 2013, 12:00:18 am
I also had bad CNS side effects (insomnia, brain fog, mild psychosis) from Atripla, which slowly built up to a breaking point, and switched to Complera.

In 4 months after the switch most negative side effects went away - now I can sleep and focus almost as before treatment. Even if I'm considering moving to a treatment with even lower CNS side effects, I am very happy that I did switch - I would only go back to Atripla if it was my only available option.

I posted a longer version of my story here:

http://forums.poz.com/index.php?topic=50936.0
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on October 15, 2013, 12:03:24 am
I also had bad CNS side effects (insomnia, brain fog, mild psychosis) from Atripla, which slowly built up to a breaking point, and switched to Complera.

In 4 months after the switch most negative side effects went away - now I can sleep and focus almost as before treatment. Even if I'm considering moving to a treatment with even lower CNS side effects, I am very happy that I did switch - I would only go back to Atripla if it was my only available option.

I posted a longer version of my story here:

http://forums.poz.com/index.php?topic=50936.0

LOL . I was posting a link to this thread in in yours while you did the same . Too Funny .
Title: Re: The Sustiva/Atripla Thread
Post by: jam77 on October 15, 2013, 12:14:03 am
Haha Jeff, we obviously think the same way!

But seriously, this thread has been extremely helpful, and I'm happy to share my experience here.


LOL . I was posting a link to this thread in in yours while you did the same . Too Funny .
Title: Re: The Sustiva/Atripla Thread
Post by: walkingpoz on November 11, 2013, 10:09:41 pm
I have now been on Atripla for 2 months (maybe some of you remember my "switching from isentress+truvada to atripla" thread ... i'm pretty sure i'm the only person who has ever done that switch) and the dizziness has disappeared, as long as i'm not taking it with food. It even helps me fall asleep at night as it makes me a bit sleepy. Directions say you shouldn't eat anything for two hours before and one hour after Atripla was taken. For me that works exactly the other way round. Nothing happens if I have a meal one hour before Atripla time, but if I eat something one and half hours after Atripla I get all dizzy and sleepy and don't function properly.

The dreams that I have are not much different from the dreams I had before I took Atripla. The only difference is that I never realize that I'm just dreaming which I could often tell before I was on Atripla.

I'm concerned about long-term effects like a decline in cognitive function which is why I am probably going to switch to Trii (Tivicay+Epzicom) when it becomes available in Europe which will be in 2015 I guess.

As I am writing this I am having peak plasma concentrations of Efavirenz in my blood and I notice that I am a bit slow and doing a couple of typing errors. I hope it doesn't affect my personality negatively over the long term.

My viral load seven days into taking Atripla was undetectable and I hope that it's still undetectable in 3 weeks when the next check is done.

I wouldn't do that switch again since Isentress and Truvada is definitely the better option even if it's 3 pills (which is why I did the switch).
Title: Re: The Sustiva/Atripla Thread
Post by: Ann on November 12, 2013, 06:39:08 am

I wouldn't do that switch again since Isentress and Truvada is definitely the better option even if it's 3 pills (which is why I did the switch).


Why don't you go back to Isentress and Truvada?
Title: Re: The Sustiva/Atripla Thread
Post by: walkingpoz on November 12, 2013, 08:57:00 am
Maybe I'll go back. I just don't like that the switch to Atripla was for nothing.
Title: Re: The Sustiva/Atripla Thread
Post by: Ann on November 12, 2013, 09:12:38 am
Maybe I'll go back. I just don't like that the switch to Atripla was for nothing.

It's just my own opinion, but I wouldn't take anything with Sustiva in it if you paid me. Not today, when there are so many other combos out there.

Was it strictly having only one pill to take, or was it more the once-a-day dosing? (Isentress is supposed to be taken twice a day.) If it's once-a-day dosing you're after, Prezista, Truvada and Norvir is an easy to take, once-a-day combo, but it's three pills.
Title: Re: The Sustiva/Atripla Thread
Post by: walkingpoz on November 12, 2013, 11:21:06 am
It was both the fact that it's just one pill and once-a-day dosing. I'll either change back to Isentress+Truvada after I have run out of Atripla, or stay on Atripla until Tivicay  becomes available or the one-pill Tivicay+Kivexa combo.
But the Efavirenz side effects have decreased a lot compared to the first doses, so I think I'd be able to stick with it a bit longer
Title: Re: The Sustiva/Atripla Thread
Post by: koksi on December 23, 2013, 05:17:21 am
Hi there.  It's been a very long time since I checked out these forums.  I have been on Atripla since 2009 and have found it tolerable -- but I am beginning to suspect that the side effects are changing or have changed, and did so gradually enough, that I have come to accept a pretty bad situation.  First, prior to Atripla I was on Norvir-boosted Reyataz and Truvada.  I was one of those who had a jaundiced appearance.  This was really rather stigmatising.  I got married over this time (to my husband; I'm gay) and I could see some troubled looks at me during the wedding.  Then I started a new job in a new country, and I could see people examining the whites of my eyes (they were yellowish).  So I started a new job under a cloud of suspicion; due to my circumstances I'm not openly HIV positive (though I'm considering changing that -- I was recently awarded tenure and am less afraid of discrimination).

Anyway:  Atripla.  As I take Atripla at bed-time, I had lots of vivid dreams at first, which I *liked*.  Over the years however, the lucid and vivid dreams have begun to disappear.  However, what seems to be more prominent is disturbed sleep.  I have always been a bad sleeper, so for a long time I just figured this was my normal bad sleeping.  But nearly every night I wake up at about the same hour and have trouble falling asleep again, sometimes for a few hours, sometimes at all.  My job can be stressful, I am a professor at a university and have to perform in front of hundreds of students at a time sometimes.  Those days when I lecture in the morning, I rarely sleep through the night.  Sometimes I don't sleep at all.  But I always wake up regardless of whether or not I'm lecturing.  I get sweaty.  I toss and turn.  And my legs get restless, something very much like Restless Leg Syndrome.

Additionally, I might have been/probably am suffering depression over the last 4 years or so.  Sometimes this involves compulsive suicidal ideation (stabbing myself in the stomach), but I never intend to do anything really, I just think through such thoughts fairly quickly -- they appear momentarily, usually in relation to some aspect of my job I think I'm failing at -- and then they go away.  But more troubling is a low level depression.  I am anxious socially in new ways, feel insecure about almost all social interactions, and prefer to spend a lot of time at home alone watching TV or reading.  Again, the specifics of my situation make this social insecurity hard to interpret:  I moved to a new country and then started the Atripla.  So 'culture shock' and learning to live in a different culture is all part of it.  Not to mention the psychological toll of keeping HIV secret from friends and family.  But I wonder sometimes if the Atripla isn't also contributing to a low level anxiety and depression.  The depression is such that I now notice my happy moods:  they feel distinctly different from my 'normal' moods, which are depressed or else have to do with feeling low about myself.  Also, I think I mask depression with too much caffeine during the day.  When I don't drink lots of coffee I just feel flat and lifeless.

In any case, the doctors (because of the way medical care is delivered here where I am living, I rarely see the same consultant) mentioned something called 'BTripla' which is a different combo that promises fewer CNS side effects?  I don't know what it is though, and apparently has to be taken with food so perhaps is less convenient in terms of consistent or convenient dosing.  I am curious if people have used it and what it's like.

I have told the doctors about the sleep disturbance, but not about the anxiety/depression issues.  Increasingly I am hoping at least to solve the sleep problem.  I was wondering about medications that might work not by *putting* you to sleep, but by keeping you asleep, since it's waking in the night every night that troubles me.  I also think I need to ask for short prescriptions of xanax or something that can help me feel less stressed and more sleepful on the nights before big lectures that stress me out.  Do people have advice about sleeping medication/combinations that can work with Atripla.

Not-so-parenthetically:  I have been undetectable for years after starting treatment, after chronic viremia following infection in 2006; the seroconversion experience for me was awful.  I feel very healthy physically:  the gym, yoga, pilates, the whole bit.  I just wish my sleep were more satisfying and I'm beginning to worry about a creeping depression.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on December 27, 2013, 08:42:45 am
Hi Koksi . I think a med change should be discussed and considered for any one with depression and thoughts of suicide or a history of mental illness . There are other combos that will not contribute to the depression and I hope you follow through and talk to your doctor about this and come back here with an update .   

Sorry it took so long to get a reply to your concerns but the holidays has kind of  messed me up from following up in some threads .   
Title: Re: The Sustiva/Atripla Thread
Post by: jam77 on December 28, 2013, 04:31:42 pm
Kotski, after few years with atripla I found myself in a very similar situation. The sleep troubles were starting to be unbearable, especially for work (similar job), as were other CNS side effects. Consider a med switch as there are many options that have less CNS symptoms. As of myself I switched to complera, and I feel way better than with Atripla - Now I sleep much better, and I don't have any depression issue anymore. I talked about my experience few posts above, hope it helps.
Best,
j
Title: Re: The Sustiva/Atripla Thread
Post by: koksi on January 06, 2014, 01:57:22 pm
Thanks to those who responded.  I need to think it through carefully.  This thread has taught me a lot actually, and I appreciate the collective wisdom/advice here.
Title: Re: The Sustiva/Atripla Thread
Post by: Reggie on January 12, 2014, 12:15:37 am
Hello..

I am new to this all and recently diagnosed in mid November after entering hospital for phenomia. I was diagnosed with HIV and my viral load over a million and CD count of 79.I started Atripla at the end of November and adhering to it. At first effects were major but now alot less althoughs still dont sleep as well and somedays feel depressed.I'm wondering if in part this is due to the meds fighting my high viral load at the moment?...And if as the viral load decreases I will feel better mentally?

I will see the Doc again on 16 and see how all is doing. I have put on 6 kilos I lost when ill and feeling quite strong.Still wait to do my first cd4 count and viral load test since starting anti virals 5 weeks ago. My Doc seems to think I was probably infected 5-7 years ago. I work as a physical trainer so have always been in good shape and wish to continue to keep in shape although of late have felt quite Fatigued.Am working out again but not too hard as dont want to push too hard.

Any information  that can be given on the above will be muchly appreciated.


Still a mental block for me as have a wife who is very supportive and children in their teens that at this point won't tell.

Thanks

Reggie
Title: Re: The Sustiva/Atripla Thread
Post by: Azrael2012 on February 13, 2014, 10:53:02 pm
Hey Everyone

Yeah Ive been on Atripla for since 2009 and had no side effects other than Insomnia which did sort itself out.....but now....Im having night sweats, and the drunken room spinning side effects that I prob should have had years ago...as well as waking up with a foggy head and wanting to vomit all the time......wonder if its time to switch ???
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on February 13, 2014, 11:04:16 pm
Hey Everyone

Yeah Ive been on Atripla for since 2009 and had no side effects other than Insomnia which did sort itself out.....but now....Im having night sweats, and the drunken room spinning side effects that I prob should have had years ago...as well as waking up with a foggy head and wanting to vomit all the time......wonder if its time to switch ???

If you and your doctors have ruled other factors out then I would not fear making a change .

More than a few of us has had late onset of symptoms with this drug and that's something some doctors do not think is possible but I know it was in my case and my doctor is a believer now too . Best of luck .
Title: Re: The Sustiva/Atripla Thread
Post by: Dan0 on February 14, 2014, 03:28:29 am
Hey Everyone

Yeah Ive been on Atripla for since 2009 and had no side effects other than Insomnia which did sort itself out.....but now....Im having night sweats, and the drunken room spinning side effects that I prob should have had years ago...as well as waking up with a foggy head and wanting to vomit all the time......wonder if its time to switch ???

Drunken room spinning side effects? Those hit me at year five on Atripla. It was a 'curiosity' to my ID doc and I went for test after test. MRI, brain scans, and some contraption on my head for five days to measure brain waves. At one point, they thought it might be a tumor! The scan came back abnormal, which precipitated all these other tests. I flat out asked him if it was or could BE related to the meds. He said he 'did not think so'. I switched to Stribild and I have had ONE incident a few days after the switch and none since. A couple weeks ago I had my first follow-up with my doctor and I really laid it all out for him related to the late stage side effects.

His response to my litany of symptoms was, 'I've heard some similar things from my other patients.'  Apparently, I was not the only one. My response was, 'maybe you should LISTEN to them!'

Title: Re: The Sustiva/Atripla Thread
Post by: Azrael2012 on February 15, 2014, 07:09:05 am
Thanks you guys... xx....yeah Im back to see the ID Doc soon.
I have Epilepsy and both docs say its not their meds that cause any sustained interaction but I'm not convinced by what they say.

My numbers were VL UD and CD4 764 and that was 7 months ago, so Ive had em all done again about a week ago.

I would love to have a good a good nights sleep where I don't wake up feeling like Im on a boat and I go crashing into the wall..eek..and now to top it all off I have a staph infection that refuses to go away as its "colonised"  :-\
I never thought of asking about longterm side effects of the Atripla tho I did know that at some stage it may have to be that a switch would happen.....even my Epilepsy meds say say on the bottle "don't take in case of Epilepsy" lol




Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on February 15, 2014, 07:17:01 am
Thanks you guys... xx....yeah Im back to see the ID Doc soon.
I have Epilepsy and both docs say its not their meds that cause any sustained interaction but I'm not convinced by what they say.

My numbers were VL UD and CD4 764 and that was 7 months ago, so Ive had em all done again about a week ago.

I would love to have a good a good nights sleep where I don't wake up feeling like Im on a boat and I go crashing into the wall..eek..and now to top it all off I have a staph infection that refuses to go away as its "colonised"  :-\
I never thought of asking about longterm side effects of the Atripla tho I did know that at some stage it may have to be that a switch would happen.....even my Epilepsy meds say say on the bottle "don't take in case of Epilepsy" lol


Have you talked to your doctor about your suspicion that Atripla is effecting you adversely ?

I am by no means suggesting that you should change your meds but if there comes a time you have thoroughly thought it through and want to do so you may have to insist rather than ask your doctor for a change . I had to do that with my doc's they really did not want me to change but in the end it was my insistence and a new doctor that got me there .   
Title: Re: The Sustiva/Atripla Thread
Post by: Azrael2012 on February 15, 2014, 07:45:49 am
Hi Jeff,

Um....yeah we did chat about it.....he wants to see the results of these bloods first.

 Im also awaiting surgery and he wants me to be as healthy as possible....he's a great doc and suggested a switch over to Isentress and Truvada to help stop the drunken monkey feeling.....Im on such high doses for the Epilepsy alone Id love to give my liver a rest but I can't.

Weight has also dropped and Im starting to look wrecked, I forgot to mention to him the joint pain Im having...mostly knees and feet.
Ive to see him again later in the week so hopefully il see whats goin on.


Title: Re: The Sustiva/Atripla Thread
Post by: auntyjeff on February 20, 2014, 12:55:05 pm
hi, I'm new to this site i have a question i have been on atripla for a few years i went from CD-4 count of 250 to 946 in this time, i have changed doctors due to lack of care and my new doctor asked if i wanted to change to complera, I'm scared atripla has seemed to work well except for nightmares and anger issues. my next apt is in April where the doctor would like a decision can anyone give me pros and cons of changing
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on February 20, 2014, 02:41:30 pm
I think the best way I can answer the question is to say that to my mind there are no cons to a med regimen that works and has few side effects .

If you stop Atripla cold turkey you could always go back to it if if want to without any resistant issues ... resistance mostly happens when you fail to consistently take your meds or do it over time hit or miss . I had to go back to Atripla ounce before I found the combo that is right for me and it was not a problem to do so . 

If you are having the nasty issues that can happen sometime with Atripla you have little to fear by changing your combo ... there is lots to choose from and many have far less side effects .     
Title: Re: The Sustiva/Atripla Thread
Post by: Azrael2012 on March 02, 2014, 08:13:11 am
Hey Everyone....

Well the news so far is that VL is UD.....so happy about that ,but, Im still having drunken monkey issues....CD4 is now at 694 and after full screen for everything as part of an yearly MOT I'm good.

Insomnia is back with a vengeance again and I'm on Zolpidem again its early days so will see if it helps. It didn't last time.  :-\ Im back to see my HIV doc soon again and will have a long chat about a possible switch, I doubt he will resist that as he told me before, "you're the one taking the meds and we have to make sure you are responding  well and you are comfortable with the regime"

Next week I see my Neurologist and a med change regime is long overdue. Fingers crossed I get a switch and fast.

If anyone has any recommendations about their own switch over Id be keen to hear about it.

Cheers  :)
Title: Re: The Sustiva/Atripla Thread
Post by: wolfter on March 02, 2014, 08:27:48 am
I know many people are hung up on taking fewer pills for convenience sakes, but adding more pills to your regimen could be the solution.  I recently had to switch out one of my meds and added 2 more. 

Almost immediately, the feelings that I was going crazy left and my sleep patterns returned to normal.  Everyone has different reactions to the drugs so our experiences differ. 

With so many combos available, it might be worth a little experimenting.  My only complaint now is that I think I'm sleeping too much...lol  I'm not accustomed to a full 8 hours every day.

best of luck
Wolfie

OH, and Sustiva for me was a mind destroying drug also.  Instead of feeling drunk, I always felt high.
Title: Re: The Sustiva/Atripla Thread
Post by: Azrael2012 on March 02, 2014, 12:22:04 pm
Thanks Wolfie

Thats good to know about the Sustiva.  ;)

Id be glad to get back to sleeping a normal sleep pattern again, but, its been so long for that Ive forgotten what that is like  ;D

I will keep ya all informed as to what happens next.

I feel like just stopping my Atripla all together....stupid I know but Im fed up to the back teeth of this. *sigh*
Title: Re: The Sustiva/Atripla Thread
Post by: eric48 on March 02, 2014, 12:57:31 pm
If you stop Atripla cold turkey you could always go back to it if if want to without any resistant issues ...

is not consistent with this

http://www.aidsmeds.com/archive/Sustiva_1615.shtml

If you plan to stop Atripla, you may want to ask your doc to script the Sustiva and Truvada separatly

Resistance do occur outside of the non-adherence issue: it was observed in the SMART trial where patients where ordered by the cilinical trial staff to stop meds but were not explained who to do it safely.

Resistance to Sustiva (and even more, from NVP) was observed in that context

If you ask you doc about HOW to stop meds, and ask in an educated fashion, then doc will know you are serious about it and may be more prone to script a switch

BTW, this is one of the things that I do not like so much about combo drugs: they mix drugs with different pharmacokinetic profiles (and wait until Injectables: they are like Hotel California: you can check-in anytime, but you can never leave): good for BigPharma, not so much for the patient

Cheers

Eric
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 02, 2014, 05:03:34 pm
is not consistent with this

http://www.aidsmeds.com/archive/Sustiva_1615.shtml

If you plan to stop Atripla, you may want to ask your doc to script the Sustiva and Truvada separatly

Resistance do occur outside of the non-adherence issue: it was observed in the SMART trial where patients where ordered by the cilinical trial staff to stop meds but were not explained who to do it safely.

Resistance to Sustiva (and even more, from NVP) was observed in that context

If you ask you doc about HOW to stop meds, and ask in an educated fashion, then doc will know you are serious about it and may be more prone to script a switch

BTW, this is one of the things that I do not like so much about combo drugs: they mix drugs with different pharmacokinetic profiles (and wait until Injectables: they are like Hotel California: you can check-in anytime, but you can never leave): good for BigPharma, not so much for the patient

Cheers

Eric

Not so much an issue when you go to another combo while undetectable on your current regimen but the truth is you are right to point this out that there is no room for emphatic statements on the issue of resistance . 
Title: Re: The Sustiva/Atripla Thread
Post by: Azrael2012 on March 02, 2014, 10:08:01 pm
Yeah Id rather have the meds broken up into something more manageable that will not interfere with my epilepsy meds as the dosages for those three already are at their highest peaks and seizures are uncontrolled by them again.

And my staph infection has started again....is it any wonder Im ready for running.

Thanks everyone for all yer help so far, its greatly appreciated x
Title: Re: The Sustiva/Atripla Thread
Post by: zach on March 02, 2014, 10:45:13 pm
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 02, 2014, 10:49:26 pm
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.

There are other meds so do not let them talk you into doing any regimen you are not comfortable with . I think ... no, I know I suffered severe issues with that drug too . 
Title: Re: The Sustiva/Atripla Thread
Post by: Ann on March 05, 2014, 08:05:10 am
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.

Zach, by all means, refuse Sustiva. It being a (potential) cause of suicidal ideation is well known, even though some doctors either never got the memo, or pretend they haven't.

Do you have any resistance problems or are you free to take whatever combo you feel will suit you best?

I made it clear to my doc that NO WAY would I take Sustiva. I ended up choosing Prezista, Norvir and Truvada and I'm very happy with it. It's three pills once a day, and the only caveat is that it needs to be taken with at least a small amount of food for maximum absorption. He was happy with my choice as it also has a good track record of crossing the blood/brain barrier with little to no CNS side-effects. This combo has one of the lowest side-effect profiles available.
Title: Re: The Sustiva/Atripla Thread
Post by: wolfter on March 05, 2014, 08:40:00 am
i am terrified of taking sustiva again, just about willing to drop to my knees and beg not to be put on it. i am convinced it was a leading contributor to a suicide attempt.

That fear in itself is reason enough not to take this drug.  If you're battling your doctor over decisions like this, perhaps it's time to move on.  My previous idiot doctor totally dismissed my every concern when I took this drug.  In the midst of taking it, my life suddenly went to hell and it sent my already depressed mind into a deep abyss.  It was so bad that I decided to simply stop taking a drug that was whacking what little bit of sanity I had left.

Through some sort of divinity, I was introduced to the greatest doctor imaginable in the ER of a neighboring county.  I'm pretty sure they simply wanted him to sign off on the palliative care orders while I laid in that ward with a giant “haz mat” sticker on my door.  (Yes, even in this day and age.    )

We have a unique relationship and I trust this doctor with all my being.  I think that is probably the most important thing I’ve learned on this journey.  I will never again have any health care professional that doesn’t reasonably address my concerns.

A short while back, I had terrible issues with part of my combo, Isentress.  It was an awesome drug at first and got me to UD pretty quickly.  But severe insomnia reared its head and I had no choice but to drink a few glasses of wine every night if I wanted sleep.  I was very honest with my doctor and he made a switch that is currently beyond wonderful.  I think it’s the first time in my almost 30 years where I’m on something that has no side affects.

The doctor/patient relationship is, in my opinion, the most important aspect of living with this virus. 

Take care and best wishes
greg
Title: Re: The Sustiva/Atripla Thread
Post by: ShadesOfGrey80 on March 06, 2014, 04:40:57 am
Today is my day 2 on Sustiva/ Kivexa...

I think it is great that everyone is sharing their thoughts on the drug but at the same time it is also rather scary to hear something like this at the beginning of a treatment as most of the stories shared on Sustiva here are negative.

Guess will have to keep an eye on my cognitive function when I see the clinical psychologist for my cognitive function test in 6 months.

Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 06, 2014, 07:41:07 am
Today is my day 2 on Sustiva/ Kivexa...

I think it is great that everyone is sharing their thoughts on the drug but at the same time it is also rather scary to hear something like this at the beginning of a treatment as most of the stories shared on Sustiva here are negative.

Guess will have to keep an eye on my cognitive function when I see the clinical psychologist for my cognitive function test in 6 months.



Hi Shades ... this thread is intended for anyone who wishes to speak about their own experience with the drug but its people who are unhappy that are most vocal on most all issues in life . I have said several times along the way in this thread that Atripla / Sustiva is a great drug or combo for many people .

In n a nutshell ... because of the nature of the potential symptoms this drug can have on people it deserves a high level of scrutiny .
Title: Re: The Sustiva/Atripla Thread
Post by: ShadesOfGrey80 on March 06, 2014, 09:02:11 am
Hi Jeff,

Thank for the reminder and sorry for freaking out. Again, I think it's great to see different experiences on here so we can be aware of possible side effects.

 :)
Title: Re: The Sustiva/Atripla Thread
Post by: Almost2late on March 22, 2014, 11:12:07 pm
Hi everyone,

I just had a smoothie after my Atripla dose.. Will it still do its job and kill the VL?  I'm not too worried about side effects just worried if about it doing its job right now.

Frank
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on March 22, 2014, 11:15:53 pm
Hi everyone,

I just had a smoothie after my Atripla dose.. Will it still do its job and kill the VL?  I'm not too worried about side effects just worried if about it doing its job right now.

Frank

Eating or drinking does not impact the drugs effectiveness, it only can increase the potential side effects .
Title: Re: The Sustiva/Atripla Thread
Post by: Almost2late on May 17, 2014, 08:38:24 pm
Hi everyone,

Still on Atripla and I never miss a dose. My cd4 is up to I think 184:D, but my VL still not undetectable yet, at about 600:P, I think thats what he said.. Wont know for sure till I get a hard copy for my records.. also the doc said geno & pheno test show no resistance (again).. Now I am happy to have my cd4 climb up, but I'm a little concerned that my VL didn't go to UD.. Why does it take so long to go down? Is Atripla weaker than other meds? The test was from May 6, I was expecting something in the low 100s to UD.. Is this normal? I'm sorry for being such a fucking whiner, but you guys are like my HIV guru's ... "Help me Obi Wan Kanobi you're my only hope."  :) Thanks




Title: Re: The Sustiva/Atripla Thread
Post by: Matts on July 21, 2014, 02:38:06 pm
I am sure that all members always read the AM News :). But I want to post this link again:

"Sustiva (Efavirenz) Linked to Doubled Risk of Suicidality"

http://www.poz.com/articles/Sustiva_suicide_761_25901.shtml (http://www.poz.com/articles/Sustiva_suicide_761_25901.shtml)

 All Sustiva/Atripla users, please watch carefully Your mood.
Title: Re: The Sustiva/Atripla Thread
Post by: medic01 on September 01, 2014, 07:46:47 pm
Hi all, newbie here, I have a quick question, I was recently diagnosed July 31,2014. My VL was not bad, so my doctor put me on Atripla, I have to say Ive never experienced side effects from a drug before like this. I thought I would give it the recommended two weeks to see if they would go away but they haven't. I work at night, so I take my meds before going to bed in the morning, but when I awake I feel like im cracked out, and high for at least half the day. Is there another med out there that you could recommend that my doctor put me on that is not as bad as Atripla?
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on September 01, 2014, 07:51:44 pm
Welcome to the forum . If you are not resistant to any meds then you have many choices to go to . Im sure others will be by to advise on what meds they are on . I went from Atripla to truvada and intelence and have not had a single bad thing to report, very happy with the change . 
Title: Re: The Sustiva/Atripla Thread
Post by: sidd34 on October 25, 2014, 07:25:22 am
HI everyone..
New to this forum and HIV! Enjoying the read...
I started my meds a month ago and did my first test this week. To my surprise my CD4 has sky rocketed from 660 to 1540 and VL dropped from 148000 to 1202 within a month. I am on Viraday and seem to be doing OK... but reading these posts looks like the side effects of Atripla (Viraday) dont reduce over time? I do get a fuzzy head and that "hangover" feeling...Also occasional restless/sleepless nights.. Saying that its only been a month since I have been on medication. Is it worth giving Viraday few more months to see if there are any changes in the side effects before asking my doc to change the meds?
Apologies if this sounds like a basic question but new to all this!

Thank you, S
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on October 25, 2014, 08:43:08 am
HI everyone..
New to this forum and HIV! Enjoying the read...
I started my meds a month ago and did my first test this week. To my surprise my CD4 has sky rocketed from 660 to 1540 and VL dropped from 148000 to 1202 within a month. I am on Viraday and seem to be doing OK... but reading these posts looks like the side effects of Atripla (Viraday) dont reduce over time? I do get a fuzzy head and that "hangover" feeling...Also occasional restless/sleepless nights.. Saying that its only been a month since I have been on medication. Is it worth giving Viraday few more months to see if there are any changes in the side effects before asking my doc to change the meds?
Apologies if this sounds like a basic question but new to all this!

Thank you, S

Atripla or Viraday is a great drug for many and yes, sometimes it takes awhile for the side effects to settle down. If you can bare giving it a little more time to see if things get better, although a month is a considerable time already to know if you can tolerate it . There are other combos that may be a fit for you so don't be shy about asking questions on the forum or insisting that you doctor make a change if need be .

The worst part of HIV treatment should have to be having to remember to taker your meds or figuring out how to pay for it and not how it makes you feel . I switched from Atripla to Intelence / Truvada and have zero side effects ... absolutely none .     
Title: Re: The Sustiva/Atripla Thread
Post by: sidd34 on October 27, 2014, 02:46:17 am
Thanks Jeff, I am going to keep taking Viraday for another month and see how I go!
Will keep you guys posted on how I do!

Cheers, S
Title: Re: The Sustiva/Atripla Thread
Post by: guitargal on December 01, 2014, 01:51:00 am
i just wanted to chime in about my experience with atripla.

 the summer 2010 i was screaming at my stepdaughter for no real reason..always annoyed at everyone, couldn't work my stupid part time job.
late winter 2011 it got worse..

with me I had anxiety that progressively got worse. anger, mad at people for the tiny things i never got upset about..i was forgetful, had a hopeless feeling (even though things were going so well in my life, best ever) and the nightmares. waking up screaming and crying.

I had a lot of leg pain and cramps at that time.  i also had a few episodes where my legs just gave out..one minute they were there and the next i was holding my self up on the counter..

I did have a few thoughts about driving my car off the road or jumping from a bridge.. never thought like that in my life. i wanted to crawl in a ball on the floor and sleep next to my bed..WTF!!??

I spoke to my dr. about the dreams and anxiety.
he did not offer any anti anxiety meds. he said some people have a "squirrely mind" what ever that means. Said we could switch in the future it it was that bad convinced me to stay on..numbers were good don't rock the boat.. never told me that the med was known to have these issues.

a friend told me
 by mid May 2011
so things got worse , I called and told them i was going out of my mind and needed to go off..they said i had to wait for my next appointment, 2 months out..mid July..
i called again a few weeks later..same deal..this is the doc i had been seeing for 12 years!

about 2 weeks  before my appointment i was out of the RX and just stopped. the thoughts anger and dreams were just too much..i was going to ruin my relationship with the constant bitching and being pissed off..

i had been through every hiv drug since 1992 and i had enough.

after a week or so my mind was clearer, i was happy! myself again.dreams subsided..like i was awakened from torment, released form from prison..

legs still hurt. slept better..

thinking he would give me a new cocktail..
at the appointment he told me to stay off meds and see if my leg pain and cramps would get better..

in hind sight he was wrong. he was not prepared to figure out a new cocktail for me.i found out it is against CDC  and WHO guidelines to take  a patient off meds.. IRIS or other OI could happen..also my VL shot up and i was more "contagious" we always use condom;s but still, i didn't think or know my VL would jump so high so fast..

legs got worse..then my arms and wrists and ankles..my whole body stabbing pains. like someone had a voo do doll of me!

i called, this was 2 weeks after said appointment.. he did NOT give me a new cocktail still.he ordered gabapentin..i took one dose and that was not fun at all..(too high a dose like he prescribed is not recommended for patients w/ kidney loss..also one is supposed to start at a low dose, 100mg  3x a day ? and work up , not 900 mg a day from day one!

i called another ID doc and got an appointment for a second opinion..

by the time i got in to see her and put on complera over 2 months went by and my pain was worse.

fast forward..the tenofovir most likely caused kidney damage that went un noticed since 2008 

(diagnoses with CKD in Spring 2014) (truvada,atripla,complera then also stribild!)
how they could not see that i had poor kidney  blood tests is beyond me..i went back and got my records and sure enough the kidney loss was there. i took the records to the nephrologist and he said i had stage 3 kidney disease since 2008..

i later learned what the tests mean , eGFR and creatinine and can follow them now. i followed my labs before but only some of them..it is the dr.'s job, unfortunately they miss things and kept giving me meds i should not have been on..

so..my advice is to learn what the labs mean, if you have a gut feeling the meds are making things worse, please do not let the doc push you around..

(they had me stay on meds even with yellow eyes and skin, telling me my numbers are good and i could wear sunglasses,,yes he said that!)

you can switch meds..there are a lot of options for many out there..





Title: Re: The Sustiva/Atripla Thread
Post by: zach on December 01, 2014, 04:12:16 am
i'm not one for conspiracy theories, think people that buy into them are mostly nut jobs.

but i see something going on with atripla, and have to wonder. it sure does feel like a lot of doctors simply hand out atripla scripts with little thought, and no second guessing that decision.

is gilead pushing that?

i was dx'd very sick, teh aids from day one. tossed a bottle of atripla, with little guidance or counsel. one standing order, TAKE THE PILL. never, at any point, did that doctor say anything about known cns side effects or contraindications in people with known bipolar type disorders.

even after a suicide attempt, doctor simply said "well, we don't want that to happen again" no shit man. he tossed me another bottle, keep taking your pill. even as i complained i was coming apart at seams. TAKE THE PILL.

getting onto a different med (and doctor) was the BEST thing i've done in this fight. wish i had known from day one, i would have told them hell no, that i was a nut job long before aids. i don't ever need to make that worse

there is no doubt atripla beats hiv down. it does the job. at what cost? there are many other combos that are effective, without the risks.

if you find yourself in this hole, speak up, loudly
Title: Re: The Sustiva/Atripla Thread
Post by: Ptrk3 on December 01, 2014, 09:30:25 am
Don't know if there's a conspiracy, but maybe ID's tend to put newly diagnosed HIV positive patients on Atripla because that was the first combo?  So maybe some ID's are lazy and go with the flow, if they insist on continuing with Atripla when patients complain about side effects. 

I was diagnosed in hospital with PCP in August 2013, cd's of 9 and VL of 111,000, and was immediately put on Atripla and have not missed a dose since.  Other than some vivid dreams (which have been cool!), I've not noticed negative side effects. I reached UD in about a month, and CD's are rising slowly (149 in September--still low, but much better than 9!).  I've not had a physical illness since starting ART.

I certainly agree with you, Zach, that there are several other single pill combos out there that are effective alternates to Atripla, if patients have negative side effects and bring those side effects to the attention of the ID.  If the ID does nothing, it's time to change ID's, absolutely, as you did Zach.  One must own this disease and stomp it into the dust in the way of his or her choosing (with ART, of course, not with herbs and spices  ;) )
Title: Re: The Sustiva/Atripla Thread
Post by: zach on December 01, 2014, 10:01:09 am
not with herbs and spices  ;) )

i see what you did there...  ::)

i'm going to put the rest of my thoughts on this in my treatment thread, i realized writing it i stray off on a tangent
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on December 01, 2014, 10:57:08 am
Don't know if there's a conspiracy, but maybe ID's tend to put newly diagnosed HIV positive patients on Atripla because that was the first combo? 

I think you mean that Atripla was the first all-in-one dose medication for HIV, it was not the first "combo", which could just mean anything other than mono-therapy. "Combination therapy" became available once we could combine different classes of HIV meds, or in 1996.

There's no "conspiracy" by Gilead (btw, Atripla is a Gilead/Brisol-Meyers joint venture, and anyway Gilead also markets one other all-in-one fixed dose HIV med, Complera). Atripla is doled out the most because it has the longest history, and doctors figure most new patients prefer simplicity and not multiple pills. The other fixed dose possibilities are newer, so unless the doctor treats a lot of HIV patients he/she will be less familiar with them.

At any rate it is still negligent of any doctor not to inform a patient of possible side effects, and additionally at least in the two states where I live a pharmacist dispensing something to a new patient will additionally ask if the patient is aware of possible side effects. And, of course, any new prescription routinely comes with a package insert that the patient should read, so one could argue that the new patient is also complicit in this circle of negligence, though obviously the doctor is most responsible.
Title: Re: The Sustiva/Atripla Thread
Post by: zach on December 01, 2014, 11:17:41 am
i'll admit to being complicit

i filled out a questionnaire, one of the questions "do you have a history of mental illness" i checked no... that is on me alone

when asked if i was aware of the side effects, i read the print out given with the meds, and answered yes

that was the extent of my initial involvement in the decision (i didn't know it was a decision that could be made either)

somewhere in all those warnings, yeah it mentions a history of mental illness. it also pretty much says (exaggerating here) may cause sudden death

they overwhelm you with the possibilities

just look at this thread, the commonality is cns and mood side effects due to sustiva

i've since read the warnings on all my meds, they all read very similar. maybe not neon flashing, but that particular risk, and the importance of that question about history... i think should stressed more than it was for me

at a time i was laying in a hospital bed, yeah, i felt overwhelmed
Title: Re: The Sustiva/Atripla Thread
Post by: Miss Philicia on December 01, 2014, 11:27:57 am
Because the CNS issue effects a higher percentage of patients than side effects from other HIV meds it's imperative that the doctor fully inform the patient. I was merely wanting to point out that there are/should be checks and balances if that fails -- the pharmacist and the medication insert.

I will never excuse a doctor that prescribes this medication without fully going over the suicidal ideation and CNS/depression issues. Then again I don't even think this medication should be on the NIH first line recommendation list any longer.
Title: Re: The Sustiva/Atripla Thread
Post by: Ptrk3 on December 01, 2014, 06:21:25 pm
Thanks for the clarification, Miss Philicia, on the "combo" business.  I appreciate it, as "exactitude in small matters is the essence of discipline."  I want to write things correctly, so thanks much.

On the Atripla matter, as written, I do take it.  So far I've not noticed any side effects but I do know that a lot of folks on the forum think Atripla should be ditched and I have read the reasons.  If I talk to my ID about something else, does it matter if it's any one of the other single-pill combos?   What would you recommend, if not Atripla?
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on December 01, 2014, 07:02:28 pm
Thanks for the clarification, Miss Philicia, on the "combo" business.  I appreciate it, as "exactitude in small matters is the essence of discipline."  I want to write things correctly, so thanks much.

On the Atripla matter, as written, I do take it.  So far I've not noticed any side effects but I do know that a lot of folks on the forum think Atripla should be ditched and I have read the reasons.  If I talk to my ID about something else, does it matter if it's any one of the other single-pill combos?   What would you recommend, if not Atripla?

I think you may have got the wrong message . We are trying to say that doctors and patients need to discuss the possible CNS side effects and warn people with mental illness they should avoid Atripla . If you are on Atripla and its working side effect free then stay on it …. if it aint broke don’t fix it .
Title: Re: The Sustiva/Atripla Thread
Post by: californiarunner on February 14, 2015, 05:37:20 pm
Thanks to everyone for their information on Atripla...I am now about to decide to start with it or not.

Diagnosed in 2009, started LAMIVUDINE (3TC) and Efavirenze in 2010

I can tolerate the mix but I still dislike the Efavirenze, (messes with my sleep) and the 3TC gives me Anemic like conditions. (Red blood cell counts low)

Also, my sex drive is usually low, and I have constant pain in the back of my legs...not sure if that is from the meds but that is my suspicion.

I am 49 and compete in all the distance events and therefore I'm looking for something better.

My doctor is now telling me Atripla would be our next choice, since I live in South America and my insurance will approve that.

My question is, Will I have similar side affects since the actual medicine is pretty much the same.....with the difference that Atripla is ONE dose at night?

I would LOVE to wake up one day and feel NORMAL, and not have pain in my legs all day!

Thank you all in advance for any advise!!
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on February 14, 2015, 05:45:08 pm
Welcome to the forum . If you have trouble with the one formulation you most likely will have it with the other so my advice is to pick another med if you can .
Title: Re: The Sustiva/Atripla Thread
Post by: mlgoforth on July 11, 2015, 01:53:11 am
 :) Hello all. My background *Infected 1980, 35 years with HIV, Tested HIV+ 1987
*HIV Drugs 1998-2005 Viracept, 3TC, D4T
Changed to lessen metabolic syndrome (didn't work)
*HIV Drugs 2005-2010 Sustiva, 3TC, AZT
Changed to get normal sleep, brain function (working but recovery is taking years)
*HIV Cocktail 2010 to now- Reyataz, Norvir, 3TC, AZT
*Virus undetectable since 1998, CD4 in 1998=60 (AIDS), 2015=500 range
Side or other effects, 1998 on Metabolic Syndrome, 2003 on Extreme Fatigue gets worse @ year, 2005 on Neuropathy, 1998 on Buffalo Hump, 2014 on Wasting upper arms.
2013 Diabetic Ketoacidosis, well treated with Insulin.
Take Cannabis for Neuropathy, Lisnopril for blood pressure, Lipitor for Cholesterol, Testosterone (low for my age), Various supplements, Simple diet, avoid processed foods, lots of fermented food
Social Security Disability 2013
     So now I am 5 years out from stopping Sustiva (on for 5 years) and still my brain and body have not returned to normal.  I don't recommend Sustiva to anyone.  Sustiva gave me insomnia so that I rarely woke up rested.  Thus it increased fatigue, when I had hoped it would lesson fatigue and metabolic syndrome.  I took it at night and if I didn't get to sleep I would feel a weird artificial unpleasant high.  My doctor was reluctant to change drugs. He said I should wait till I feel better.  I told I won't feel better until I am off this drug, so he then allowed the change.
     Is anybody else having long term withdrawal symptoms from Sustiva?  I get periods of extreme fatigue every 2 months (sometimes more often) that last for 4 to 6 weeks (no matter how much sleep I never feel rested).  As mysteriously as it starts it just stops and I return to normal refreshing sleep.
     My doctors have eliminated all the things they know of that could cause this.
Since the Diabetic Ketoacidosis I feel stronger after each period of fatigue but the severity of each fatigue episode is the same. My brain feels like a mismatched soup of chemicals while I am fatigued.
     My personal theory is that HIV and the Drugs to treat it mess up the gut bacteria and cause inflammation which leads to metabolic syndrome. Currently I am eating more fermented foods to help keep and restore balance to gut bacteria. Hopefully this will also help healing from Sustiva.
    Thanks for listening, reading other post here has been helpful.
          Love, Miguel
Title: Re: The Sustiva/Atripla Thread
Post by: thomasgrn on August 01, 2015, 03:19:55 pm
I, too, have the Final Exit book and even went to far as to use the helium method, but somebody found me and took the bag off my head.
Title: Re: The Sustiva/Atripla Thread
Post by: Tonny2 on August 02, 2015, 12:08:17 pm


        ojo     Has anybody gotten a rash while taking sustiva and what did you do to solve the rash?....thanks for the feedbacks...hugs                               ojo
Title: Re: The Sustiva/Atripla Thread
Post by: Hedorian on September 22, 2015, 01:16:55 am
hallo there, just my experience:

started atripla yesterday: first night/day:

- No vivid dreams(dammit i was waiting for them somehow)
- little dizzyness after 1 hour taking it,than sleep.
-at wake up no problem,just feel slightly inappetent,but if its due to the pills or the stress of work im facing now i dont know.
-same for the sleeping,i wake up at 3:30 and had some problem fall asleep but again not sure if its the pills or the stress from job.

So..so far so good, in 2 weeks i have another liver/kidney tests and see on long term what happen.
Title: Re: The Sustiva/Atripla Thread
Post by: going_gone89 on September 27, 2015, 01:10:04 pm
Just started Stocrin last night, along with Truvada. Feelings of depersonalization and derealization were pretty obvious. Vivid dreams were not as bad as I expected, in fact I feel rested despite them.
Feeling anxious and shaky this morning, almost what it feels like a few hours after smoking pot? Funny considering one of the side effects I've read about is a false positive for pot in urine testing (which will make finding a job, im sure very enjoyable).

Besides that, I'm just happy I'm keeping my breakfast down. Which makes me curious, I know side effects vary greatly, but how soon after starting therapy do you experience those types of side effects? Nausea, vomiting, diarrhea, etc.
Title: Re: The Sustiva/Atripla Thread
Post by: mlgoforth on October 02, 2015, 05:21:31 am
re; going_gone89
« on: September 27, 2015, 01:10:04 PM »

     "Just started Stocrin last night, along with Truvada. Feelings of depersonalization and derealization were pretty obvious. Vivid dreams were not as bad as I expected, in fact I feel rested despite them."
    [[ If your body can adapt this should go in a month or so, if it doesn't choose another HIV Cocktail.  Be careful don't get used to the depersonalization and derealization, I did that and it took 5 years to realize the drug was making me more and more and more crazy.]]
    "Besides that, I'm just happy I'm keeping my breakfast down. Which makes me curious, I know side effects vary greatly, but how soon after starting therapy do you experience those types of side effects? Nausea, vomiting, diarrhea, etc."
     [[For some it starts write away, some they never get those side effects. With Sustiva I had to take 1 1/2 dose Lopermide Hydrochloride (Imodium AD) every day to control diarrhea ]]
Title: Re: The Sustiva/Atripla Thread
Post by: Hedorian on October 10, 2015, 02:36:58 am
UPDATE on my Atripla trip.

Blood test kidney/liver perfect after 2 weeks treatment.

Dizzyness after taking it greatly reduced.

Heavy head on waking up at morning almost disappear.

had a mild rash on body at day 12 for just 1 day,gone in 3 days without taking any medicine.

No nausea,diarrea,psyco effect or whatever seen.

Sleep deep and good . ( no sweat no wake up no dreams).

Taking the pills on really empty stomach (4 hours last meal) for me helped than only 2 hours from.last meal

so i can say im lucky one with little to noone side effect.

Now i will check for the long term one (mental foggy..memory issue)

keep you posted
Title: Re: The Sustiva/Atripla Thread
Post by: RobbyR on October 26, 2015, 12:25:56 pm
As someone who has taken this medication since 2010, I can say that for someone initially starting treatment or with a low cd4 it can be a great medication the first couple years I was on it overall got me very healthy has kept my numbers great, cd4 has stayed in the 700s. But the side effects have gotten cumulatively worse. First couple years in, problems with sleep. Insomnia, problems falling asleep. Then, severe panic attacks, anxiety, jittery, all this happened about two years in. Not sure if it takes that long to change your chemistry or something but it didn't happen overnight. It's kept me healthy but at quite a price in other ways. I went through a bad spell where I was suicidal and having terrible dreams.

I feel that Atripla has aggravated my anxiety to the point of having to be put on a lot of other meds to control the anxiety and insomnia. I've been put on Mirtazipine, Melatonin, and even blood pressure meds because of heart palpitations.

I've held out because I wanted to research other options but now after a week-long bad bout of insomnia, I can't take it any more and have told my doc I want to ditch it for good.

I suspect the dosing time at night plays a role in how bad it messes my sleep up.

Hopefully my new regimen I can take early in the day and so I'll sleep better. Lack of sleep literally makes you angry and insane.

If you can tolerate Sustiva great but I strongly suspect I can't, and am going to try either Stribild or Isentress/Truvada or another combination. I'll post again with updates.

My hope is that if I get a regimen I can tolerate better, I won't need all these other meds I hate feeling over medicated.
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on October 28, 2015, 12:41:53 am
Greetings! I have waited a long time to read this post as i was on a different treatment, but now that i am UD, and my CD4 is good, my ID Doc raised this as an option yesterday.
I currently take 9 pills a day - Truvada x1 and Alluvia 4x2. She suggested i move to Atripla.
I inquired about alternative once-a-day regiments because of the harsh side-affects of Atripla, e.g. Complera, Stribild, or Trivicay (which i read about in this forum) and she was not really aware of them - probably because they are not available in Thailand. However, for Complera, she was familiar and knew the make-up which she said was Truvada + Rilpivirine.
She told me that compared to Atripla, which, according to her is made of Truvada + STocrin, and that Stocrin is known to have harsh side affects, but that they usually go away after a few weeks. She mentioned that the  Rilpivirine is known to be much milder than the Stocrin. The issue is, that taking the Atripla would mean taking 1 pill, where taking the Rilpivirine+Truvada combo would mean taking 2 pills.
My motives for changing treatments are as follows in order of priority:
1. Long term affects - i figure the less pills i take the less damage i will do to my body. Maybe i am wrong here, but it only seems logical to me - the less pills, the less damage i do (i know this isn't very scientific). Also, since i have a long way ahead of me (i hope at least 30 years!) i want to take something that has the least amount of damage to my body. I know the Alluvia (aka Kaltera) is bad for the long run, and i am now reading that Atripla is also not the kindest kid on the block. Which is why i am really considering the 2 pill regiment.
2. Routine and timezone - i prefer a once a day regiment at night - it is easier to remember, it is a single reminder of my unfortunate burden, but mainly b/c of of logistics - i travel west a lot and that means i have to wake up very early just to take my dose - sometimes i wake at 4AM to take my morning dose of Alluvia when in Europe. A once-per-day regiment at night will allow me to take that dose in the eve in Europe - so it would be much more convenient.
3. Travel logistics - each time i travel i must take a zillion pills with me. This means i calculate and recalculate and count and recount before each trip. It is a burden and a source of anxiety ("did i bring the right amount?"). Then the crossing of the borders with so many pills, in some countries that are not very HIV tolerant (e.g. Singapore until a few months ago denied HIV+ people from entering the country) can lead to a many questions if they get discovered. Imagine a 5 day business trip - today it is 45 pills in a carry on as opposed to 5 (or 10)!! the 45 makes me look like a smuggler hahaha!
4. Concealment - my condition is a well kept secret between me and my wife and my Doc (and you guys!). It is a challenge to hide 3 months worth of bottles today especially with 3 kids in the house. I figure, 3 (or 6) bottles is much easier to hide and disguise.

So, as of now i have a choice:
1. Stay on the 9 pills -PROs? "If it ain't broke don't fix it!" My body has adjusted, it seems to be doing wonders (CD4 over 1000 and UD) and i am used to the routine.
CONs - As i have mentioned above - travel, toxicity, concealment etc
2. Switch to Atripla - PROs - once a day? WOW! 1 PILL once a day?! Double WOW!!
CONs - just read the posts in this thread!
3. Switch to Truvada+Rilpivirine (aka Complera in it's 1 pill form) - PROs - once a day, supposedly less adverse side affects than Atripla.
CONs - 2 pills instead of one.
There is also a cost issue. Funny enough, option 3 is the cheapest - slightly cheaper than option 2 which is significantly cheaper than my current regiment.

I will continue with my current regiment for another 3 months, but i want to start researching my next step.

Comments, insights and sage advice will be much appreciated! Thanks!
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on October 28, 2015, 07:10:54 am
If you have ever had a history of mental illness, depression or anxiety then Atripla is not the drug for you. Many regimens that are not single pill regimens can be taken once daily after you are stable and undetectable for awhile so don't get hung up on one pill treatments. 
Title: Re: The Sustiva/Atripla Thread
Post by: Wade on October 28, 2015, 09:28:24 am
That is an excellent point , I have been thinking
the same thing for quite a while.
What's one more pill ??? and little ore no side affects.
Title: Re: The Sustiva/Atripla Thread
Post by: RobbyR on October 28, 2015, 10:55:22 am
Yea I don't even care if I have to take 2-3 pills a day at this point, I've realized in the two days I've been off Atripla how much better I feel without it! Not panicky, anxious, or depressed at all! I feel clear headed, and calm! :)

Unfortunately I'll have to start taking it again just until next week when my appointment is then they'll switch me off. But I'm so ready to be done with this nasty pill for good. Any other regimen that doesn't cause full scale meltdowns will be an improvement!
Title: Re: The Sustiva/Atripla Thread
Post by: Wade on October 28, 2015, 11:48:10 am
Good to hear Robby !
Title: Re: The Sustiva/Atripla Thread
Post by: islandguy on January 11, 2016, 10:25:31 am
I am literally sitting here with the first Atripla pill in hand ready to start and now I'm somewhat terrified.  Jeez I'm panicky and haven't even started.

It's taken months to finally get all the blood work done, find an ID, and get a prescription that I've been so anticipating.  The box arrived today (insurance will only do mail order but on the other hand I'm not even paying a co-pay) so I thought I'd browse through here to see what kind of side effects I might be expecting and I certainly wasn't expecting the nightmares (some literal) that I've been reading about here.

I'm just wondering if all the side effects I'm reading about really only happen to a small percentage of people who have chosen this thread to talk about and there are thousands more who take it with no problems so no reason to come here?

I've been so looking forward to finally getting started on meds that it's a real bummer to now read about what could happen.

I guess there's no harm in giving it a try, monitoring my behavior, and hoping for the best or an alternative down the line. 

So here goes.  Gulp.  First step towards the rest of my life.
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on January 11, 2016, 11:55:32 am
Hi Islandguy,
I also just took my first Atripla tonight and wondering what side affects i will feel. My doc gave me some great advice. He said, some people have bad reactions, MOST people have mild reactions and some have none. He continued to explain that there is no "formula" as to whom will feel what. So, as he put it," you never know unless you try!".
2 hours into it and feel normal. Hoping i stay this way. Good luck!
Title: Re: The Sustiva/Atripla Thread
Post by: islandguy on January 11, 2016, 11:05:33 pm
Terry no side effects that I've felt over 2 days but I take it at night so I may be sleeping thru anything. I was thinking about it today and I'm pretty happy to be starting it. It's proven to work, and work fairly quickly. Once I'm UD I can consider something else and there will no doubt be something even better coming along. Hope you're doing good too.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on January 12, 2016, 07:11:38 am
Hey Guys, Please don’t be afraid to take Atripla with any more or less concern than you would any other med. The point of this thread was to make sure people were vigilant and on the lookout for any possible side effects … which you should do for any medication.
Title: Re: The Sustiva/Atripla Thread
Post by: bocker3 on January 12, 2016, 07:55:05 am
While Atripla is not for everyone (which could probably be said about almost ANY drug), I have been taking Atripla (or its components, as Atripla didn't exist when I started) for over 10 years.  The only "side effect" that I have are the vivid dreams still come around from time to time -- but over all this time only a handful have been "unpleasant".  Oh, I suppose that the tenofovir may be responsible for some gas at times, but then, I could have inherited that from my father too....   :o

So, be on the lookout for any side effects, but don't panic -- many, many people take this drug without any negative impacts.

Good health to you!!
Mike
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on January 12, 2016, 12:03:35 pm
So, 24hours into this and the affects are.... interesting  :).
I take the pill at 10 pm. Last night I ate about 30 minutes before (tonight i didn`t). At about 2 hours  or so i start to get a bit "foggy" - like i smoked some old weed. Face gets a little hot and ears sorta ring a bit -nothing major.
I slept well, although i did have weird dreams about taking my old morning dose of 4 Aluvia through a nerf-gun (oh well, dreams!), and suddenly realising i shouldn`t be "shooting" those 4 pills into my mouth since i only take my 1 pill at night. This dream recurred 3 or 4 times in various versions (always the nerf gun..).
i woke very groggy. And then i was very foggy - hard to concentrate, hard to multitask, slightly "woozy", and my coffee tasted weird.
I decided NOT to go to the gym feeling that way. i hung around and worked for a few more hours and then finally drove to a meeting, and felt completely normal from that point on. So something like hour 2-12 after taking the pill is when i am in "high" mode. I probably should sleep longer. I hope this wares off by next week because i have a business trip and i can`t be "high" for the first few hours! hahahaha. Besides that, my stomach is noticeably MUCH better. I`m liking this 1 pill business! Will keep you posted.
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on January 12, 2016, 07:53:45 pm
quick update - i woke up this morning (6:30 after the last post) and feel fine. Slight "tin" taste, no "fog" like yesterday, no dizziness, definitely multi-tasking - i`m on fire here shooting out the emails and managing a few crisis. So all good!
No dreams about nerf-guns, although i did have a great dream about opening up a grocery store in the 1930`s - it was like an entire movie!
Besides that, stomach is a zillion times better!
Atripla I LOVE YOU!
Gents, thanks for the words of support - it helped in making this decision.
Good day to all!
Title: 2 years on Atripla
Post by: RobbSC on January 14, 2016, 01:39:37 pm
I am going on 2 years on Atripla. I honestly don't have any real issues with the meds except for the occasional wild dreams - many aren't all that bad though. I am a bit groggy in the morning and it takes me a while to really get moving. I spoke to my doctor about the new TAF version but he prefers I stay on my current regime since it is working so well. Since then maybe I am making up more side effects like lack of focus, reduced energy, etc...I really don't know that the meds cause them or if it is me reading about new drugs and wanting to be on them for kidney and bone issues long term.
For now though I will press forward with Atripla until side effects are obvious.
Title: Re: The Sustiva/Atripla Thread
Post by: Tonny2 on January 15, 2016, 02:35:21 pm


           ojo       Hi everyone...I took sustiva for five years, I remember having just three or four nights with vivid dreams, after that, I didn't feel anything, tho, everybody reacts differently to the meds,I still think sustiva is a good med, I stopped it because I had to switch treatment..the only way to know if a medication is going to be good for you is trying it and see what happens, fortunally, sustiva is not like abacavir, which, now, you have to be checkedfor a adverse reaction before you take it...hugs          ojo
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on January 22, 2016, 11:42:18 am
Hi,
Looking for some advice here. I have recently started Atripla and so far the side affects have been mild. i have  had a few cases of that "drunk" feeling, and i guess it happened when i ate late close to when i took my dosage, or when i drank.
Normally though, i just go to bed an hour or 2 after taking my meds at 10pm.
My problem is that i must fly to Europe which means i will need to take the pill at 5pm (i live in Asia).
I worry because it means i will have to endure a good 5 hours before getting to bed, and a big part of that will be with colleagues from work or family.
I also will have to drive.
Should i just delay taking the pill by 5 hours the first day (compensating the time difference) so that i take the pill at bedtime while in Europe? The trip will be for 8 nights.

Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on January 22, 2016, 11:45:20 am
Hi,
Looking for some advice here. I have recently started Atripla and so far the side affects have been mild. i have  had a few cases of that "drunk" feeling, and i guess it happened when i ate late close to when i took my dosage, or when i drank.
Normally though, i just go to bed an hour or 2 after taking my meds at 10pm.
My problem is that i must fly to Europe which means i will need to take the pill at 5pm (i live in Asia).
I worry because it means i will have to endure a good 5 hours before getting to bed, and a big part of that will be with colleagues from work or family.
I also will have to drive.
Should i just delay taking the pill by 5 hours the first day (compensating the time difference) so that i take the pill at bedtime while in Europe? The trip will be for 8 nights.



Atripla has a long half life and stays in your system a long time … it would be ok to just take before bed or even to skip one dose to get back on schedule. It wont hurt a thing.
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on January 22, 2016, 08:28:41 pm
Thanks for the. quick reply JeffG! As a follow-up, does hat mean that i won`t screw things up by switching back to the normal schedule 8 days later?
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on January 22, 2016, 08:56:24 pm
Thanks for the. quick reply JeffG! As a follow-up, does hat mean that i won`t screw things up by switching back to the normal schedule 8 days later?

No … it wont hurt a thing .
Title: Re: The Sustiva/Atripla Thread
Post by: Archi on January 25, 2016, 01:14:41 pm
I have Atripla 11 days. Do not fill nothing wrong. Doctor told can't eat 2-3 hours before pil  . How long need can't eat after this pil ?  Can't eat because why ?  Samtiems I'm we're hungry at this a few hours , or go out with friends.  And all ways take treatment at 10.30 pm.
Title: Re: The Sustiva/Atripla Thread
Post by: Tonny2 on January 25, 2016, 02:15:09 pm
I have Atripla 11 days. Do not fill nothing wrong. Doctor told can't eat 2-3 hours before pil  . How long need can't eat after this pil ?  Can't eat because why ?  Samtiems I'm we're hungry at this a few hours , or go out with friends.  And all ways take treatment at 10.30 pm.

           ojo        Hello Archi... some people get less side effects on an empty stomoch, but you can try it with food too, I used to take my med with food and never had any problems, some friend of mine, take it with food too, one even take it in the morning, its easier for him that way...why don't you try take it with food and see how you feel, most likely you will not feel anything because you haven't noticed any side effects...so, the only way you will know how you will feel taking it with food, its trying, I think you will be fine...hugs        ojo
Ah!!!, then, you can go out with your friends
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on January 25, 2016, 06:47:16 pm
It wont hurt the effectiveness of Atripla but a fatty meal can increase the possibility that you will have the CNS issues listed as possible side efects like vivid dreams … but the med still works great no matter what your diet is.
Title: Re: The Sustiva/Atripla Thread
Post by: Tonny2 on January 25, 2016, 09:31:18 pm


           ojo         Hello again Archi, I agree with Jeff, food might increase your side effects, but  still think you should try it, I did it, and I just had three or four nights of vivid dreams, that was it, but, I think, since you haven't had any side effects, you will be fine...best of luck...hugs                                                                     ojo
Title: Re: The Sustiva/Atripla Thread
Post by: Archi on January 25, 2016, 11:03:18 pm
Thank you for answer. I'm hope new therapy be better very soon. And we be negative again :)
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on February 10, 2016, 01:57:52 am
Hi,
It has been around 3 weeks since my last post in this thread and my opinion re Atripla has changed  - for ME. I have noticed that i am waking more and more foggy, less capable of being "sharp", and easily confused by things that should be fairly simple. It is hard to explain. I have also been a bit moody. Sometimes i just get "snappy" at my wife, or impatient. In general i feel down. My wife thinks it is all in my mind. Of course this makes me upset especially since she is right - the problem i am feeling is IN MY MIND!! :-)
I thought i would sweat it out for at least another month, but i have decided today to see the doc tomorrow and ask him to switch to something else. In Thailand we do not have any other 1 pill regiments, but we do have 2 pill regiments (Complera-like) and i think that is what i will choose. I can`t stand losing what i have always thought was my strongest asset - my sharp, quick, on-top-of-things mind. Luckily i didn`t buy that 6 month supply yet!
I hope i am not being to rash with my decision (maybe the Atripla is to blame for this too!).
Will keep you posted.
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on February 10, 2016, 10:14:16 am
Hi,
It has been around 3 weeks since my last post in this thread and my opinion re Atripla has changed  - for ME. I have noticed that i am waking more and more foggy, less capable of being "sharp", and easily confused by things that should be fairly simple. It is hard to explain. I have also been a bit moody. Sometimes i just get "snappy" at my wife, or impatient. In general i feel down. My wife thinks it is all in my mind. Of course this makes me upset especially since she is right - the problem i am feeling is IN MY MIND!! :-)
I thought i would sweat it out for at least another month, but i have decided today to see the doc tomorrow and ask him to switch to something else. In Thailand we do not have any other 1 pill regiments, but we do have 2 pill regiments (Complera-like) and i think that is what i will choose. I can`t stand losing what i have always thought was my strongest asset - my sharp, quick, on-top-of-things mind. Luckily i didn`t buy that 6 month supply yet!
I hope i am not being to rash with my decision (maybe the Atripla is to blame for this too!).
Will keep you posted.

If it’s the meds and it sounds like it is, you will feel better in a day or two after a med change and then you will know. Its hard to get people to realize it takes abut 5 seconds more of their time to take another pill so getting hung up on a one pill a day regimen is very limiting … Best of luck !
Title: Re: The Sustiva/Atripla Thread
Post by: terrymoore on February 12, 2016, 12:25:09 am
If it’s the meds and it sounds like it is, you will feel better in a day or two after a med change and then you will know. Its hard to get people to realize it takes abut 5 seconds more of their time to take another pill so getting hung up on a one pill a day regimen is very limiting … Best of luck !
Jeff G, you are so correct and i took your advice. I feel great - it is weird how i was so affected by the efavirenz. Thanks for the great advice (once again!).
Title: Re: The Sustiva/Atripla Thread
Post by: Jeff G on February 12, 2016, 10:31:02 am
Jeff G, you are so correct and i took your advice. I feel great - it is weird how i was so affected by the efavirenz. Thanks for the great advice (once again!).

Thanks, I know how you feel. I was preaching to people about how efavirenz can affect some people while I was suffering from it too and didn’t put it all together and realize it was the meds. I also had a doctor who was not happy I wanted to change meds so I stuck with Atripla for a very long time and felt foolish once I was off it for waiting so dang long.

I feel I need to say this again for others to read… If Atripla or Sustiva or its components are working for you and you feel well on it you are not alone … many people tolerate this drug and do quite well on it. It’s a powerful and effective medicine and in some countries its one of the few options people have.
Title: Re: The Sustiva/Atripla Thread
Post by: Tonny2 on February 12, 2016, 03:00:49 pm
I feel I need to say this again for others to read… If Atripla or Sustiva or its components are working for you and you feel well on it you are not alone … many people tolerate this drug and do quite well on it. It’s a powerful and effective medicine and in some countries its one of the few options people have.

         ojo        Hello, yes, it is important to let everybody knows that ATRIPLA, SUSTIVA, STOCRIM, maybe not good for some people, but for others, like me, it is a good medication, there are a lot of people in Latin America taking it, they have no other choice, they are doing fine, but some have read this thread and are a bit concerned...if you keep having problems for three or four weeks with ATRIPLA, SUSTIVA, STOCRIM, it is not for you...hugs                                                                                              ojo
Title: Re: The Sustiva/Atripla Thread
Post by: Archi on February 24, 2016, 09:47:40 am
Hello. I'm on Atripla and make test after first month therapy. My numbers do not change. Was 164 now 175. Was 18% now 17%  Was 66000 now 61000. That normal ?
Title: Re: The Sustiva/Atripla Thread
Post by: RickDallas on March 16, 2016, 04:27:28 pm
Thanks for this much needed conversation. My ID doctor switched me to Atripla back in 2007 and I responded well. My dreams were quite cinematic at first, but there definitely was more of a presence or feeling in my brain/head compared to my former medications: AZT/3TC/Crixivan. Since testing positive back in 1985, I have managed to work full-time while completing another Masters and finally a PhD, but there have been side effects. As I read through this Sustiva/Atripla Thread there has been a lot of discussion about cognitive issues and the subtleness of side effects of these drugs. While on Atripla I have experienced cognitive issues, joint/spinal pain, and bilateral tinnitus, and now maybe neuropathy in both my feet. At first, I thought it was the blood pressure and cholesterol medicines that may have caused these side effects, but now it seems possible to argue that Atripla may be the culprit. I have had a 9 year run with Atripla that has kept my HIV in check; however, the side effects are mounting and I am seriously considering changing my medication. I have always appreciated the generous copay assistance card Bristol-Myers Squibb/Gilead has offered through the years, but it may be time to switch medications. It has been extremely frustrating that none of my doctors have gone on record blaming Atripla for the cause any of my side effects. I would argue that if you are responding well to Atripla, please carefully monitor any subtle side effects and be vigilant. Make sure your ID doctor(s) are monitoring as well and be proactive. Hoping someone can confirm my findings.
Best,
Rick 
Title: Re: The Sustiva/Atripla Thread
Post by: MitchMiller on March 17, 2016, 03:01:00 am
I'm still a bit confused why doctors are still dosing patients with 600mg Sustiva instead of 400mg.  The 2013 WHO Encore1 trial demonstrated non-inferiority between the two doses in treatment naïve patients at 48 weeks.  A follow at 96 weeks confirmed the durability of the results.

If someone were having problems with Atripla, one alternative is to switch to Truvada plus 2 200mg Sustiva capsules. 

I take Epzicom plus 2 200mg Sustiva capsules daily.  The CNS symptoms are greatly reduced with the lower dose of Sustiva.
Title: Re: The Sustiva/Atripla Thread
Post by: Expat1 on April 09, 2016, 02:41:51 pm
Another logical switch is the one I made.  From Atripla to Truvada/Edurant (2 pills)  (also same as  COMPLERA® only 1 pill.)

I think that the copay cards are the same as Atripla.  (I dont know for certain as I get my meds in Thailand).

I had issues (mental) with the Atripla.  Strage thoughts, moodyness.  And since the switch to edurant, that's all over.

Good luck.
Title: Re: The Sustiva/Atripla Thread
Post by: AllSmiles83 on April 10, 2016, 11:16:43 am
After being on Atripla sine it was approved, I think I'm finally going to pick up the phone tomorrow and call my doctor and ask to change to Stribild. I'm tired of being moody and muddling through my days in a fog or feeling hungover etc I also have nights of no sleep at all and have been getting dizzy, uncoordinated and forgetful/confused. One of the biggest eye openers for me has been the fact that I just purchased my first home. I am so excited and anxious to close on the loan and move into it...but I can't even feel those emotions because of the brain cloud I live in. I can physically feel my head just being "wrong". Like something is in my brain preventing clear thinking, MY ALT level is more than double high end and AST is slightly over..(liver stuff) as well. I wonder if that's connected? Does everyone think Stribild is a good choice? I know there is one drug I cannot take because I take  Omeprazole for acid reflux. I'll keep everyone posted. Atripla had worked wonders on my VL and CD4 but I cannot take living like this anymore.
Title: Re: The Sustiva/Atripla Thread
Post by: Wade on April 10, 2016, 11:35:17 am
Welcome AllSmiles,
I take Genvoya , nearly the same as Stribild and have tolerated it very well with no side affects. Keep us posted on your med switch.
Congratulations and Good Luck in your new home !

Best, Wade
Title: Re: The Sustiva/Atripla Thread
Post by: zach on April 10, 2016, 11:38:56 am
hi allsmiles, welcome

i was on atripla, and now take stribild

it's been fine, would recommend it

i'm not a fan of atripla, if you're moody, i'd switch
Title: Re: The Sustiva/Atripla Thread
Post by: AllSmiles83 on April 10, 2016, 11:47:43 am
Thank you Zach and Wade. Is Genvoya the same as Stribild just TAF instead of TDF? I've been researching night and day lately on the new drugs that I don't even care to find my notes sheet right now lol.
Title: Re: The Sustiva/Atripla Thread
Post by: zach on April 10, 2016, 11:48:11 am
yep, exactly
Title: Re: The Sustiva/Atripla Thread
Post by: AllSmiles83 on April 10, 2016, 11:52:13 am
Ok, thanks. For some reason I didn't think it was on the market yet so I think that as long as our ADAP covers it, it will be Genvoya then.
Title: Re: The Sustiva/Atripla Thread
Post by: zach on April 10, 2016, 12:00:47 pm
good luck
Title: Re: The Sustiva/Atripla Thread
Post by: Wade on April 10, 2016, 12:14:43 pm
Was approved in November.

https://www.poz.com/drugs/classes/Single-Tablet-Regimens
Title: Re: The Sustiva/Atripla Thread
Post by: RobbyR on April 10, 2016, 01:43:08 pm
I took Atripla for years and I realized it was making anxiety and depression much much worse. I started Stribild late last year and it's been much better no more brain fog, much more clarity of thought, and no more severe panic attacks or night terrors. Only issue is sometimes I forget to take it because I was so used to taking Atripla right before bed on empty stomach, and it says Stribild should be taken with food, which I usually try to do, but it's still hard to get the new routine of taking it earlier in the day, if I could take it right before bed that would be better and I'd be less likely to miss a dose. But I don't eat right before bed.
Title: Re: The Sustiva/Atripla Thread
Post by: AllSmiles83 on April 10, 2016, 07:07:21 pm
Great to know its been good to you other than the timing/food issue. I'll have to create an alarm or routine
Title: Re: The Sustiva/Atripla Thread
Post by: AllSmiles83 on April 25, 2016, 05:34:54 pm
Doctor prescribed me Genvoya today!!he said he was waiting to see how long I'd go before asking but he's been discussing it with all Atripla users. I can't get the Genvoya until my insurance processes the Prior Authorization so a few days. I' actually excited about this switch, and just keeping fingers crossed I don't puke a lot or anything on the Genvoya.. Last week I was at the grocery store and kept pressing all the wrong buttons on the credit card machine.. My friend was like.. Are you ok????? The sustiva needs to go...
Title: Re: The Sustiva/Atripla Thread
Post by: AllSmiles83 on May 11, 2016, 12:50:20 am
I'm happy to share that after being off the Atripla and on Genvoya for almost a week I have seen a definite difference in my state of mind. I will mimic what someone said earlier on in the thread.. a veil was lifted! I have been sleeping better, not waking up in a stupor, and haven't experienced a day with a buzzing foggy head since!! I'm so glad I got over my dear of switching and did it. Now we wil see in 3 months if the meds are working on keeping me undetectable with a cd4 in the 1000s. Also, thankfully I did not experience the nausea or any other effect so far. I'm finally able to feel the joy of moving into my new home without a cloud hanging over my head. If anyone has doubts about switching...I highly recommend it!!!
Title: Re: The Sustiva/Atripla Thread
Post by: Jim Allen on May 17, 2016, 03:47:32 pm
I'm happy to share that after being off the Atripla and on Genvoya for almost a week I have seen a definite difference in my state of mind. I will mimic what someone said earlier on in the thread.. a veil was lifted! I have been sleeping better, not waking up in a stupor, and haven't experienced a day with a buzzing foggy head since!! I'm so glad I got over my dear of switching and did it. Now we wil see in 3 months if the meds are working on keeping me undetectable with a cd4 in the 1000s. Also, thankfully I did not experience the nausea or any other effect so far. I'm finally able to feel the joy of moving into my new home without a cloud hanging over my head. If anyone has doubts about switching...I highly recommend it!!!

Glad to hear you are doing so well and the switch has suited you.
Very good update.

Jim
Title: Re: The Sustiva/Atripla Thread
Post by: RickDallas on June 30, 2016, 03:27:02 pm
Glad the Genvoya has created a positive difference in your state of mind. I was on Atripla for 9 years and finally made the switch to Genvoya in March 2016. I definitely found myself waking up with a clearer head.
Best,
Rick
Title: Re: The Sustiva/Atripla Thread
Post by: newlifepoz on November 29, 2016, 04:30:56 am
Hi all. My first post.

I was diagnosed three years ago and began on Atripla. First time was a complete trip. Had a dream where everything was melting and I could feel the room spinning, but that only lasted one night. Had a rash (but no itching) a few days after and it went away quickly. Always slept really well, but overtime I began experiencing the psychological stuff. It didn't create problems it just heightened them like a magnifying glass. I would get really nervous in a car when someone else was driving. Abnormally so and irrationally. When I got angry it was more than it needed to be. It never lasted though maybe 20-45mins at a time. My dr recently switched me to Genvoya because she said it was more efficient. My cholesterol has been pretty high and steadily increased while on Atripla. We'll see in three months if coming off of it helps. I'm taking Genvoya in the am because I know that I'll consistently eat around the same time and I won't need to make excuses to go take a pill if I'm out with other people. After about a week now I'm beginning to mentally feel a bit more clear, calm, and relaxed...but tonight I am not sleeping. It's been three hours and I'm wide awake. Not sure if it's the Genvoya, or my body still working off the Atripla, or just not tired.
Title: Re: The Sustiva/Atripla Thread
Post by: Bernado on March 19, 2017, 05:18:52 pm
Hi. Been with Atripla for two years now and I've been undetected for one and my CD4 are on normal levels now. At the beginning I hated Atripla for it's side effects but as they started to fade away, life got back to normal, except for one thing: the dreaming.
My dreams are no longer vivid as the first nigh (God I hatted it), but have them almost on a daily basis and although most of the times I don't wake up at the middle of the night, it feels as if I don't rest at all... Does anyone have this? What can be done, for I've tried everything from teas, to doing exercise before going to sleep, to reading, not reading, watching TV, not watching TV, listening to music, etc...
I've read some other posts and most of them say that it's something that I have to get used to and I would only that I don't have enough energy during the day.
Title: Re: The Sustiva/Atripla Thread
Post by: mecch on March 19, 2017, 06:59:33 pm
Bernado - I've been in these forums for about 10 years maybe. The consensus is that solution to Atripla and people who have CNS (central nervous system) reactions to it - like you do - is to get off the efavirenz - so change the combo.

I only lasted 1/2 a year on it. I couldn't deal. 

But the challenge of course is that in some countries, HIV+ folks don't have choices. 

Do you have choices?

Welcome to the forum.
Title: Re: The Sustiva/Atripla Thread
Post by: Expat1 on March 20, 2017, 09:04:26 pm
I had the same effect Bernado, my dreams were "tedious' and I awoke felling very tired from them.  Not rested at all. 

My doctor was reluctant to change me as I cant take AZT or NVP so he was concerned about the long term durability of what I took next.  I insisted on Truvada and Rilpivirine and he finally agreed after I was very insistent. 

Very glad I made the switch.  Haven't had a sleep problem since and now on the fourth year of treatment, 3 after the switch. 

I did want to stick to 2nrtis and 1nnrti as I take a lot of other medications that would interact with boosters. 
Title: Re: The Sustiva/Atripla Thread
Post by: Bernado on March 24, 2017, 07:00:58 pm
Bernado - I've been in these forums for about 10 years maybe. The consensus is that solution to Atripla and people who have CNS (central nervous system) reactions to it - like you do - is to get off the efavirenz - so change the combo.

I only lasted 1/2 a year on it. I couldn't deal. 

But the challenge of course is that in some countries, HIV+ folks don't have choices. 

Do you have choices?

Welcome to the forum.

I do have choices (I'm from Mexico) but haven't talked to my doctor about my dreams... O guessed last time I was with him it would be temporary, but it turned out not to be... I',m actually seeing him next week so I'll talke to him about it.
Thanks for the tip.
Title: Re: The Sustiva/Atripla Thread
Post by: Bernado on March 24, 2017, 07:06:38 pm
I had the same effect Bernado, my dreams were "tedious' and I awoke felling very tired from them.  Not rested at all. 

My doctor was reluctant to change me as I cant take AZT or NVP so he was concerned about the long term durability of what I took next.  I insisted on Truvada and Rilpivirine and he finally agreed after I was very insistent. 

Very glad I made the switch.  Haven't had a sleep problem since and now on the fourth year of treatment, 3 after the switch. 


I did want to stick to 2nrtis and 1nnrti as I take a lot of other medications that would interact with boosters.

I haven't told my doctor about it still because I guesses they would go away eventually. I'm actually seeing him next week and see my options. Thanks for the response. ;-)
Title: Re: The Sustiva/Atripla Thread
Post by: Bernado on March 27, 2017, 06:08:37 pm
Hi everyone! I just saw my doctor earlier today and he told me that there are a few things I can try before considering changing treatment. He told me that I might need to change my daily exercise routine to something more demanding and drinking more water. Yesterday I went hiking with a friend and I didn't dream a bit so maybe that is the solution to my problem.
By the way, I'm still undetected and my CD4 are 465... They turned out a littel low this time because I had throat infection a few days before they drew blood out of me, but everything is fine. Fit as a fiddle.
Title: Re: The Sustiva/Atripla Thread
Post by: Expat1 on March 30, 2017, 02:25:19 pm
Bernardo, My partner takes EFV 400 mg instead of EFV 600 mg (the Atripla dose) with the other drugs the same as Atripla (TDF and FTC).  He feels better with the lower dosage.  You might ask about that dosage.  Also do you take at night and without food.  Some people say food increases the effect.  (For me I had it with and without food).

That said it is 3 pills a day instead of just 1. 

Title: Re: The Sustiva/Atripla Thread
Post by: Bernado on March 30, 2017, 03:25:21 pm
Thanks Epat1.
I'll ask my doctor if that is a solution for me. He did tell me that I should do some other activities to see if they work before considering changing treatment... So far, I'm doing ok with the advice given.
And in my case, I haven't seen any association with having food or not close to the take... I'll observe now that you suggest it!
Title: Re: The Sustiva/Atripla Thread
Post by: wardp on September 23, 2017, 05:38:45 pm
Hi, I'm 6 weeks on atripla and now having CNS issues, mood swings, poor sleep, brain fog plus I also lost a little weight,, and increased heart rate 60 BPM to 80bpm which is not good for someone who has a stent,  my vl was 3000 at start of treatment,   I suspect sustiva,, my questions are if I'm ud  at my next  check up visit in 5 weeks time, is it to soon to change the sustiva part of regime and if yes what are my best options for sustiva switch while Im on omeprazole  20mg a day with my aspirin, I don't mind an extra pill or 2 a day, and also the fact that I'm in bangkok some meds expensive or are not available yet, regards BH paul
Title: Re: The Sustiva/Atripla Thread
Post by: Bernado on September 23, 2017, 05:51:41 pm
Hi, I'm 6 weeks on atripla and now having CNS issues, mood swings, poor sleep, brain fog plus I also lost a little weight,, and increased heart rate 60 BPM to 80bpm which is not good for someone who has a stent,  my vl was 3000 at start of treatment,   I suspect sustiva,, my questions are if I'm ud  at my next  check up visit in 5 weeks time, is it to soon to change the sustiva part of regime and if yes what are my best options for sustiva switch while Im on omeprazole  20mg a day with my aspirin, I don't mind an extra pill or 2 a day, and also the fact that I'm in bangkok some meds expensive or are not available yet, regards BH paul

Hi there Paul:

All those symptoms are normal when you start on Atripla, for some people they last several weeks and for some others, within a few days. My best advise is that first, keep your cool and try to do exercise to shove them off and drink water, a lot of water and eat as healthy as you can. Second, you should ask your doctor before changing anything and if it's possible try to meet with him/her before your next schedule check up just to be sure.
As a personal note, and as far as I know, you shouldn't be taking omeprazol while having atripla because then you don't absorb the medicine properly... But again, ask your doctor about it.

Hang in there. It's hard at the beginning but it gets more and more easier until literally you wake up one day as it nothing has happened.
Title: Re: The Sustiva/Atripla Thread
Post by: wardp on September 23, 2017, 06:00:19 pm
Thank you for your reply, there is no known problem with  omeprazole and atripla, and I drink   2 litres of water a .day,
Title: Re: The Sustiva/Atripla Thread
Post by: Ptrk3 on September 23, 2017, 06:04:49 pm
FYI:  according to this website, there is no known interaction with concurrent use of omeprazole and Atripla:

https://www.drugs.com/drug-interactions/atripla-with-omeprazole-964-2502-1750-0.html

Relevant language:

Interactions between your selected drugs

There were no interactions found in our database between Atripla and omeprazole. However, this does not necessarily mean no interactions exist. Always consult with your doctor or pharmacist.

*****

Of course, everyone is unique and perhaps you are having some sort of interaction.  Consult with your physician for any further guidance on this matter, of it is of concern to you.
Title: Re: The Sustiva/Atripla Thread
Post by: wardp on September 23, 2017, 07:03:48 pm
Why are we discussing interactions when I  posted about sustiva side effects which are scientifically proven? The other question I asked was about omeprazole and contradictions to other arvs in case I need to make the switch from EF,  also its 6am and i may try and get a few hrs sleep now, thanks for your reply I appreciate it,
Title: Re: The Sustiva/Atripla Thread
Post by: Jim Allen on September 24, 2017, 01:23:57 pm
Wardp,

I got your PM. Look to be honest the best thing you can do is see your doctor sooner rather than later.

Quote
scientifically proven?

What is? Just because a med may have a side effect does not mean if you develop an issue that it is necessarily the cause. 

I'm not dismissing your concern BTW, not in the slightest. I mean next to psychological aspect some people have starting medication others do have some weeks of settling in when taking meds and a few will have problems. 

Now if you are having serious concerns and you believe the issues are related somehow to your HIV meds than you should talk to a doctor. They can advise you and if needed recommend a switch and what meds in that case would agree and suits your personal needs better.

I wish you well and hope you are okay.

Jim
Title: Re: The Sustiva/Atripla Thread
Post by: wardp on September 25, 2017, 12:22:27 am
Thanks Jim, I will take your advise and discuss my issues about sustiva with my doctor,', I also eat like a horse, and  while dropping 60kg to 58 kg since I started atripla is snot a major concern but I would like my 2 kilo back., thanks for everyones help,
Title: Re: The Sustiva/Atripla Thread
Post by: wardp on September 25, 2017, 12:49:07 am
http://i-base.info/guides/side/cns-side-effects.  I just read this interesting article, just thought I would share it,.
Title: Re: The Sustiva/Atripla Thread
Post by: wardp on September 30, 2017, 11:56:56 pm
http://www.thebody.com/Forums/AIDS/Meds/Archive/Adherence/Q246217.html.  Just had my question answered' hope  it helps others.
Title: Re: The Sustiva/Atripla Thread
Post by: wardp on October 02, 2017, 07:00:23 am
I have been so indecisive because I'm so tired , today I almost had an accident on my bike, my concentration is gone, I decided there and then, I headed for the lab for a val load and cd4.i should have the results Friday, if I'm UD im heading straight to bangkok to see my doctor for a med change. >:(
Title: Re: The Sustiva/Atripla Thread
Post by: Jim Allen on October 02, 2017, 08:07:59 am
Hi

Remember it is worth checking for anything underling concerns as well, even if its a case of ruling things out. The symptoms/issues you have are certainly not limited to the medication.

Anyhow wishing you well and hope things work out when you talk to the doctor. 

Jim