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Author Topic: The Sustiva/Atripla Thread  (Read 22748 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! :)
32 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). 
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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. 
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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 .


Offline 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 »
32 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 »

Offline Miss Philicia

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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 . 

Offline Miss Philicia

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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.
"Iíve slept with enough men to know that Iím not gay"

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

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 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.
32 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.
32 years hiv+ (oct. 2013) with a curtsy.

Offline 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

Offline Miss Philicia

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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.

Offline Miss Philicia

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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.

Offline Miss Philicia

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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
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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
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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.
32 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.

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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
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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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Welcome Thread

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. :)
32 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! :)
32 years hiv+ (oct. 2013) with a curtsy.

 


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