Meds, Mind, Body & Benefits > Questions About Treatment & Side Effects

The Sustiva/Atripla Thread

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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 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.



--- Quote from: jkinatl2 on March 21, 2013, 06:50:08 PM ---Thanks for starting this thread, Jeff. I have talked about my experiences at length before, but not sure whether I have written them out at length. Here goes:

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

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

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

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

I was really happy about that.

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

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

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

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

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

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

But I went to the group, and found that others had endured the same experiences as myself. I was, and am, a severe skeptic regarding anecdotal evidence. So I sharpened my scientific skills, acquired a physician's medical license number to log into restricted (from the public) scientific studies and peruse them myself. 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.

--- End quote ---

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!

A Systematic Review of the Psychiatric Side-Effects of Efavirenz

Changes in sleep quality and brain wave patterns following initiation of an efavirenz-containing triple antiretroviral regimen

Dream changes following initiation of efavirenz treatment

Impact of pharmacogenetics on CNS side effects related to efavirenz

Efavirenz and chronic neuropsychiatric symptoms: a cross-sectional case control study.

Changes in sleep quality and brain wave patterns following initiation of an efavirenz-containing triple antiretroviral regimen

Long-term impact of efavirenz on neuropsychological performance and symptoms in HIV-infected individuals (ACTG 5097s)

Prediction of neuropsychiatric adverse events associated with long-term efavirenz therapy, using plasma drug level monitoring.

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! 

Jeff G:
I love that update Dano .  :) .


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