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Author Topic: The Sustiva/Atripla Thread  (Read 20176 times)

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Offline Jeff G

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The Sustiva/Atripla Thread
« 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 .   

Offline darryaz

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Re: The Sustiva/Atripla Thread
« Reply #1 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.


Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #2 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! :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline Grants Committee

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Re: The Sustiva/Atripla Thread
« Reply #3 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.

Offline darryaz

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Re: The Sustiva/Atripla Thread
« Reply #4 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.

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #5 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 .

Offline buginme2

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Re: The Sustiva/Atripla Thread
« Reply #6 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). 

Offline phildinftlaudy

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Re: The Sustiva/Atripla Thread
« Reply #7 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!
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline OneTampa

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Re: The Sustiva/Atripla Thread
« Reply #8 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).



"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #9 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  ;) .

Offline buginme2

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Re: The Sustiva/Atripla Thread
« Reply #10 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. 

Offline wolfter

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Re: The Sustiva/Atripla Thread
« Reply #11 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
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #12 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 .


Online Miss Philicia

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Re: The Sustiva/Atripla Thread
« Reply #13 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?
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Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #14 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.
« Last Edit: March 21, 2013, 02:51:32 PM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #15 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 .   
« Last Edit: March 21, 2013, 02:55:22 PM by Jeff G »

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Re: The Sustiva/Atripla Thread
« Reply #16 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.



« Last Edit: March 21, 2013, 03:05:09 PM by Jeff G »
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Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #17 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 . 

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Re: The Sustiva/Atripla Thread
« Reply #18 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.
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Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #19 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 .

Offline Ann

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Re: The Sustiva/Atripla Thread
« Reply #20 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."
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #21 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.
31 years hiv+ (oct. 2013) with a curtsy.

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #22 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.
31 years hiv+ (oct. 2013) with a curtsy.

Online Miss Philicia

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Re: The Sustiva/Atripla Thread
« Reply #23 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.
"Iíve slept with enough men to know that Iím not gay"

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #24 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 .

Offline Ann

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Re: The Sustiva/Atripla Thread
« Reply #25 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.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

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Re: The Sustiva/Atripla Thread
« Reply #26 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.
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

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Re: The Sustiva/Atripla Thread
« Reply #27 on: March 21, 2013, 03:36:48 PM »
Back on track please.  I was beginning to enjoy discussing it until ....well...whatever happened.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

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Re: The Sustiva/Atripla Thread
« Reply #28 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?
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

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Re: The Sustiva/Atripla Thread
« Reply #29 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. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: The Sustiva/Atripla Thread
« Reply #30 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.   ;) 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

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Re: The Sustiva/Atripla Thread
« Reply #31 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?
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Offline bocker3

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Re: The Sustiva/Atripla Thread
« Reply #32 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
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
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Offline Ann

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Re: The Sustiva/Atripla Thread
« Reply #33 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.
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Offline jkinatl2

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Re: The Sustiva/Atripla Thread
« Reply #34 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.


« Last Edit: March 21, 2013, 06:52:25 PM by jkinatl2 »
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Welcome Thread

Offline WillyWump

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Re: The Sustiva/Atripla Thread
« Reply #35 on: March 21, 2013, 07:01:09 PM »
Very intersting read JK, Thanks for sharing.

-Will
POZ since '08

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6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
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Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #36 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.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #37 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 .

Offline buginme2

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Re: The Sustiva/Atripla Thread
« Reply #38 on: March 21, 2013, 07:55:33 PM »
JK, powerful story, thanks for sharing.


Offline Common_ground

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Re: The Sustiva/Atripla Thread
« Reply #39 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.


 
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline jkinatl2

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Re: The Sustiva/Atripla Thread
« Reply #40 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.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

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Offline sam66

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Re: The Sustiva/Atripla Thread
« Reply #41 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  :-\ )
 
december 2007 diagnosed +ve ,

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #42 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. :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline OneTampa

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Re: The Sustiva/Atripla Thread
« Reply #43 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.
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Offline sydneyson31

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Re: The Sustiva/Atripla Thread
« Reply #44 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.

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #45 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 .

Offline sydneyson31

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Re: The Sustiva/Atripla Thread
« Reply #46 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.

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #47 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 .

Offline sydneyson31

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Re: The Sustiva/Atripla Thread
« Reply #48 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 :)

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #49 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! :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline scotty54

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Re: The Sustiva/Atripla Thread
« Reply #50 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!
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Offline Pricho01

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Re: The Sustiva/Atripla Thread
« Reply #51 on: March 26, 2013, 06:22:55 PM »
Lets just say that the knives in the draw started to look extremely attractive to me....!
Dear Optimist, Pessimist, and Realist, While you guys were busy arguing about the glass of water, I drank it! Sincerely, The Opportunist

Offline MarkB

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Re: The Sustiva/Atripla Thread
« Reply #52 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.

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #53 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 .

Offline Matts

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Re: The Sustiva/Atripla Thread
« Reply #54 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.
tivicay/kivexa

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #55 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.) :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #56 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.
31 years hiv+ (oct. 2013) with a curtsy.

Offline bufguy

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Re: The Sustiva/Atripla Thread
« Reply #57 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!
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline sanitex

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  • Posts: 386
Re: The Sustiva/Atripla Thread
« Reply #58 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.
27/12/07 cd4 20 vl 1million
10/4 /08 cd4 86 vl 63
1/7/08  cd4 186 vl undetectable
16/10/08 cd4 196 vl undet
23/1/09 cd4 248 vl un
10/9/11 cd4 418 vl <40 %22
13/12/11 cd4 410 vl undet 23%
24/2/12 cd4 545 vl undet 26%
on 22/2/12 change truvada to Recovir-EM
due to no stock on Truvada.
10/9/11 cd4 418 vl <40 %22
7/7/12 cd4 359 vl <40 22%
23/8/12 cd4 400 vl <40 23%,
testosterone test 7.5 ng/ml and
thyroid (TSH)1.32 ulu/ml creatinine.eGFR blck 1.5 all fasting test morning.
13/12/2012 cd4 523 24% vl <40
18/3/2013 cd4  513  23% vl <40
regimen ATRIPLA
03/8/2013 cd4 429 22% vl <40
13/11/2013 cd4 455 23% vl <40
Anti-HBs test (quantitative ) Anti-HBs positive
Titer 16.95 mlu/ml <10.00
22/3/14 cd4 396 vl <40 % 24
24/7/14 change to Teevir

Offline buginme2

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Re: The Sustiva/Atripla Thread
« Reply #59 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.

Offline sanitex

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Re: The Sustiva/Atripla Thread
« Reply #60 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.
27/12/07 cd4 20 vl 1million
10/4 /08 cd4 86 vl 63
1/7/08  cd4 186 vl undetectable
16/10/08 cd4 196 vl undet
23/1/09 cd4 248 vl un
10/9/11 cd4 418 vl <40 %22
13/12/11 cd4 410 vl undet 23%
24/2/12 cd4 545 vl undet 26%
on 22/2/12 change truvada to Recovir-EM
due to no stock on Truvada.
10/9/11 cd4 418 vl <40 %22
7/7/12 cd4 359 vl <40 22%
23/8/12 cd4 400 vl <40 23%,
testosterone test 7.5 ng/ml and
thyroid (TSH)1.32 ulu/ml creatinine.eGFR blck 1.5 all fasting test morning.
13/12/2012 cd4 523 24% vl <40
18/3/2013 cd4  513  23% vl <40
regimen ATRIPLA
03/8/2013 cd4 429 22% vl <40
13/11/2013 cd4 455 23% vl <40
Anti-HBs test (quantitative ) Anti-HBs positive
Titer 16.95 mlu/ml <10.00
22/3/14 cd4 396 vl <40 % 24
24/7/14 change to Teevir

Offline sydneyson31

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Re: The Sustiva/Atripla Thread
« Reply #61 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.

Offline frenchie

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Re: The Sustiva/Atripla Thread
« Reply #62 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





Offline PAGuy

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Re: The Sustiva/Atripla Thread
« Reply #63 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!
March 2012---tested positive
Started Atripla, Batrim DS, Amoxycillan
April 2012---cd4 49, vl 2,000,000
June 2012---cd4 296, vl 1294
Discontinued Batrim DS and Amoxycillan
Sept 2012---cd4 300, vl UD
March 2013---cd4 308, vl 53...minor blip! Cd%26
Switched to Complera

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #64 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!
31 years hiv+ (oct. 2013) with a curtsy.

Offline PAGuy

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Re: The Sustiva/Atripla Thread
« Reply #65 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 :)
March 2012---tested positive
Started Atripla, Batrim DS, Amoxycillan
April 2012---cd4 49, vl 2,000,000
June 2012---cd4 296, vl 1294
Discontinued Batrim DS and Amoxycillan
Sept 2012---cd4 300, vl UD
March 2013---cd4 308, vl 53...minor blip! Cd%26
Switched to Complera

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #66 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. :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline frdfandc

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Re: The Sustiva/Atripla Thread
« Reply #67 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.

Offline PozGuy212

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Re: The Sustiva/Atripla Thread
« Reply #68 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.
« Last Edit: May 28, 2013, 07:01:30 PM by PozGuy212 »
March 2009 - Tested POZ
Aug 2012 - CD4 60 / VL 250K+
Started Complera
Nov 2012 - CD4 180 / VL about 2K
Feb 2013 - CD4 350 / Undetectable
May 2013 - CD4 400 / VL 50
Switched to Stribild

Offline allsmiles

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Re: The Sustiva/Atripla Thread
« Reply #69 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...

Online Miss Philicia

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Re: The Sustiva/Atripla Thread
« Reply #70 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?)
« Last Edit: June 12, 2013, 08:56:51 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Schnauzer

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Re: The Sustiva/Atripla Thread
« Reply #71 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.
One good turn gets most of the blankets.

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #72 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.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Jeff G

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  • How am I doing Beren ?
Re: The Sustiva/Atripla Thread
« Reply #73 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 . 


Offline atripla_2013

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  • Diagnoised Jan 2013, start Atripla June 2013
Re: The Sustiva/Atripla Thread
« Reply #74 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)
« Last Edit: June 27, 2013, 11:06:21 AM by atripla_2013 »
Male, 30
Diagnoised Jan 2013
Start Atripla June 2013
July.13: CD4: 351, VL: 85
May.13: CD4: 336, VL: 24100

Offline Dan0

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  • Posts: 422
Re: The Sustiva/Atripla Thread
« Reply #75 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???
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline wolfter

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Re: The Sustiva/Atripla Thread
« Reply #76 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.
« Last Edit: September 03, 2013, 04:31:32 PM by wolfter »
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #77 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.

31 years hiv+ (oct. 2013) with a curtsy.

Offline Dan0

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Re: The Sustiva/Atripla Thread
« Reply #78 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! 
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #79 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.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Dan0

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Re: The Sustiva/Atripla Thread
« Reply #80 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.....
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #81 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 .

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #82 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.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Dan0

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Re: The Sustiva/Atripla Thread
« Reply #83 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.
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #84 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 . 

Offline Azrael2012

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Re: The Sustiva/Atripla Thread
« Reply #85 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

Offline Dan0

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Re: The Sustiva/Atripla Thread
« Reply #86 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!
« Last Edit: September 26, 2013, 08:14:33 PM by Dan0 »
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline elf

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Re: The Sustiva/Atripla Thread
« Reply #87 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


« Last Edit: September 28, 2013, 04:24:29 PM by elf »
Let's have a Kiki!

Offline Dan0

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Re: The Sustiva/Atripla Thread
« Reply #88 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! 

You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #89 on: October 01, 2013, 12:59:24 PM »
I love that update Dano .  :) .

Offline Dan0

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Re: The Sustiva/Atripla Thread
« Reply #90 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.
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #91 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.

Offline newt

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Re: The Sustiva/Atripla Thread
« Reply #92 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/

- matt
"The object is to be a well patient, not a good patient"

Offline mitch777

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Re: The Sustiva/Atripla Thread
« Reply #93 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.

 
31 years hiv+ (oct. 2013) with a curtsy.

Offline jam77

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Re: The Sustiva/Atripla Thread
« Reply #94 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

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #95 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 .

Offline jam77

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Re: The Sustiva/Atripla Thread
« Reply #96 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 .

Offline walkingpoz

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Re: The Sustiva/Atripla Thread
« Reply #97 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).
10/11: CD4 554, VL 20,893
01/12: CD4 480, VL 104,000
02/12: started isentress+truvada
03/12: CD4 ?, VL 105
04/12: CD4 632, VL UD
06/12: CD4 495, VL UD
09/12: CD4 ?, VL 60
10/12: CD4 790, VL UD

Offline Ann

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Re: The Sustiva/Atripla Thread
« Reply #98 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?
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Offline walkingpoz

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Re: The Sustiva/Atripla Thread
« Reply #99 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.
10/11: CD4 554, VL 20,893
01/12: CD4 480, VL 104,000
02/12: started isentress+truvada
03/12: CD4 ?, VL 105
04/12: CD4 632, VL UD
06/12: CD4 495, VL UD
09/12: CD4 ?, VL 60
10/12: CD4 790, VL UD

Offline Ann

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Re: The Sustiva/Atripla Thread
« Reply #100 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.
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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline walkingpoz

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Re: The Sustiva/Atripla Thread
« Reply #101 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
10/11: CD4 554, VL 20,893
01/12: CD4 480, VL 104,000
02/12: started isentress+truvada
03/12: CD4 ?, VL 105
04/12: CD4 632, VL UD
06/12: CD4 495, VL UD
09/12: CD4 ?, VL 60
10/12: CD4 790, VL UD

Offline koksi

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Re: The Sustiva/Atripla Thread
« Reply #102 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.
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #103 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 .   
« Last Edit: December 27, 2013, 09:06:20 AM by Jeff G »

Offline jam77

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Re: The Sustiva/Atripla Thread
« Reply #104 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

Offline koksi

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Re: The Sustiva/Atripla Thread
« Reply #105 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.
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

Offline Reggie

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Re: The Sustiva/Atripla Thread
« Reply #106 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

Offline Azrael2012

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Re: The Sustiva/Atripla Thread
« Reply #107 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 ???

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #108 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 .

Offline Dan0

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Re: The Sustiva/Atripla Thread
« Reply #109 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!'

You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Azrael2012

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Re: The Sustiva/Atripla Thread
« Reply #110 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





Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #111 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 .   

Offline Azrael2012

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Re: The Sustiva/Atripla Thread
« Reply #112 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.



Offline auntyjeff

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Re: The Sustiva/Atripla Thread
« Reply #113 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

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #114 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 .     

Offline Azrael2012

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Re: The Sustiva/Atripla Thread
« Reply #115 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  :)

Offline wolfter

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Re: The Sustiva/Atripla Thread
« Reply #116 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.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Azrael2012

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Re: The Sustiva/Atripla Thread
« Reply #117 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*

Offline eric48

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Re: The Sustiva/Atripla Thread
« Reply #118 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
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #119 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 . 

Offline Azrael2012

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Re: The Sustiva/Atripla Thread
« Reply #120 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

Offline zach

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Re: The Sustiva/Atripla Thread
« Reply #121 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.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #122 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 . 

Offline Ann

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Re: The Sustiva/Atripla Thread
« Reply #123 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.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wolfter

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Re: The Sustiva/Atripla Thread
« Reply #124 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 ďhaz matĒ 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 Iíve learned on this journey.  I will never again have any health care professional that doesnít 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 itís the first time in my almost 30 years where Iím 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
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline ShadesOfGrey80

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Re: The Sustiva/Atripla Thread
« Reply #125 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.


Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #126 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 .

Offline ShadesOfGrey80

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Re: The Sustiva/Atripla Thread
« Reply #127 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.

 :)

Offline Almost2late

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Re: The Sustiva/Atripla Thread
« Reply #128 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

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #129 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 .

Offline Almost2late

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Re: The Sustiva/Atripla Thread
« Reply #130 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





Offline Matts

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Re: The Sustiva/Atripla Thread
« Reply #131 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

 All Sustiva/Atripla users, please watch carefully Your mood.
tivicay/kivexa

Offline medic01

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Re: The Sustiva/Atripla Thread
« Reply #132 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?

Offline Jeff G

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Re: The Sustiva/Atripla Thread
« Reply #133 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 . 

 


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