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Author Topic: The Sustiva/Atripla Thread  (Read 13535 times)

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Offline scotty54

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  • Posts: 88
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!
I may not agree with you, but will always defend your right to disagree.

Offline Pricho01

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  • Posts: 58
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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  • Posts: 292
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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  • How am I doing Beren ?
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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  • Posts: 184
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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  • wish i were here
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

  • Member
  • Posts: 159
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: 382
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

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.
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline sanitex

  • Member
  • Posts: 382
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

Offline sydneyson31

  • Member
  • Posts: 4
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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  • Posts: 6
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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  • Posts: 16
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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  • Posts: 16
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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  • Posts: 10
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

  • Member
  • Posts: 12
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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  • Posts: 1
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...

Offline Miss Philicia

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  • celebrity poster, faker & poser
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.
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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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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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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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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't fix stupid....but you can numb it with a 2 x 4"

"I have standards! ....but....you'll probably meet them."

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

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 »
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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't fix stupid....but you can numb it with a 2 x 4"

"I have standards! ....but....you'll probably meet them."

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

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't fix stupid....but you can numb it with a 2 x 4"

"I have standards! ....but....you'll probably meet them."

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

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't fix stupid....but you can numb it with a 2 x 4"

"I have standards! ....but....you'll probably meet them."

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

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't fix stupid....but you can numb it with a 2 x 4"

"I have standards! ....but....you'll probably meet them."

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

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 »
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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't fix stupid....but you can numb it with a 2 x 4"

"I have standards! ....but....you'll probably meet them."

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

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't fix stupid....but you can numb it with a 2 x 4"

"I have standards! ....but....you'll probably meet them."

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

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

 


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