Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
April 20, 2014, 09:35:33 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 620463
  • Total Topics: 46751
  • Online Today: 191
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Poll

If you're using or have used Atripla, or its notorious component Sustiva (Stocrin), were you able to stand the CNS side effects?

I'm on the stuff and just peachy :)!
13 (37.1%)
I'm on the stuff and losing my mind
5 (14.3%)
I'm off the stuff, but didn't mind or notice the CNS issues
2 (5.7%)
I'm off the stuff.  I couldn't stand the side effects.
11 (31.4%)
I'm not on meds/have never tried it, just checking this poll out.
4 (11.4%)

Total Members Voted: 34

Voting closed: December 05, 2010, 12:05:19 PM

Author Topic: Atripla/sustiva users, were the CNS side effects tolerable?  (Read 4518 times)

0 Members and 1 Guest are viewing this topic.

Offline wtfimpoz

  • Member
  • Posts: 418
  • Let's make biscuits!
Atripla/sustiva users, were the CNS side effects tolerable?
« on: November 25, 2010, 12:05:19 PM »
I've posted about my own issues with the stuff in the mental health forum before.  From what I read on here, almost no one manages to endure the stuff for too long.  Somehow though, it remains the number one prescribed HIV med.  Happy Turkey Day to everyone in the US.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline phildinftlaudy

  • Member
  • Posts: 2,949
  • sweet Ann what you think babe...
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #1 on: November 25, 2010, 12:11:51 PM »
I've been on Atripla for about a year and so far worse side effect has been some occasional vivid dreams. 
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

nychope1

  • Guest
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #2 on: November 25, 2010, 12:27:27 PM »
Started Atripla on Nov. 7th.    The forth night of taking it was a bit rough and I was very depressed the next day and thought of stopping it. A member here who has been on it for almost four years with no problems convinced me to keep going with it and it was good advice.

Since then, my 19th dose being tonight, I have to say everything has been fine. I really don't notice it at all. In fact it helps me sleep and I enjoy the dreams when I can remember them. None of the dreams have been bad and some more vivid then others.

I eat and drink just about as I did prior to beginning the Atripla. One night I drank a wee bit too much and felt like crap the next day and I am sure that was perpetuated by the med. Other than keeping my drinking in check, a big thumbs up for Atripla here.

Happy Thanksgiving!!!

Offline Lou-ah-vull

  • Member
  • Posts: 924
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #3 on: November 25, 2010, 01:20:17 PM »
Atripla since Feb. 2007.  No side effects at all other than some vivid dreams in the first year.  I really miss the dreams because they were quite trippy!
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD

Offline mecch

  • Member
  • Posts: 10,736
  • red pill? or blue pill?
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #4 on: November 25, 2010, 02:49:58 PM »
I miss the dreams too.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MitchMiller

  • Member
  • Posts: 453
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #5 on: November 25, 2010, 03:35:36 PM »
I wish you would have had another choice... "dealing with the side effects without becoming totally loco"

I had to vote "losing my mind" although it's more like "still dealing with it after nearly eight years."  I must take it at night.  If I had a light or non-fat meal, the stuff hits me hard and I really must get in bed.  It basically makes me feel like I've done too much "K" after having already been drinking... not good.   Still have the dreams as vivid as ever.  I also believe it has some creeping psychological effects, like mild depression... that slowly overtakes your personality.  At least that's my experience.  People have told me my personality has changed and I know that I have a lot less  enthusiasm and motivation...  but maybe it's just age or HIV dementia.
« Last Edit: November 25, 2010, 03:38:09 PM by MitchMiller »

Offline newt

  • Member
  • Posts: 3,868
  • the one and original newt
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #6 on: November 25, 2010, 04:31:44 PM »
Seriously, if the dreams etc have been going on for more than 9-12 months people need to think about a switch. The point of treatment is to make you feel better, not loopy. There are many effective 1 x day combinations now, even if some are more tablets than the 1 x day Atripla.

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

Offline zach

  • Member
  • Posts: 755
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #7 on: November 25, 2010, 04:33:16 PM »
i'm with mitch on this... i don't have as much time on atripla as others, in my experience it's no walk in the park, but nothing that is driving me out of my mind, to me the benefits far outweigh the "nightmare" side effects i've experienced
3/27/14 vl >300k cd4=9... plenty of room to improve

I'm walking kind of funny, Lord
Feel I'm fixing to die, fixing to die
Well, I don't mind dying
But I hate to leave my children crying

Offline SteveInToronto

  • Member
  • Posts: 55
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #8 on: November 25, 2010, 04:55:30 PM »
I have been on Atripla for almost two months, and will be discussing a switch next week with my doctor. While I'm not going crazy, I definitely feel that it is causing some CNS side effects that just won't go away (namely anxiety and headaches).

If there were no other 1xdaily options, I'd probably stick it out longer, but since there is really no need to suffer needlessly, I want to talk about some of the other options.


nychope1

  • Guest
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #9 on: November 25, 2010, 05:52:58 PM »
Don't want to get off message.

Well, for those who want a one a day regime the "quad" pill is on it's way.  A one a day that doesn't have the side effects of Atripla. I read that there were early kidney issues but it was being addressed.
My doc said it will be out sometime in 2011.

http://www.hivandhepatitis.com/2010_conference/croi/docs/0219_2010_c.html
« Last Edit: November 25, 2010, 06:05:48 PM by nychope1 »

Offline wtfimpoz

  • Member
  • Posts: 418
  • Let's make biscuits!
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #10 on: November 25, 2010, 08:09:22 PM »
I wish you would have had another choice... "dealing with the side effects without becoming totally loco"

I had to vote "losing my mind" although it's more like "still dealing with it after nearly eight years."  I must take it at night.  If I had a light or non-fat meal, the stuff hits me hard and I really must get in bed.  It basically makes me feel like I've done too much "K" after having already been drinking... not good.   Still have the dreams as vivid as ever.  I also believe it has some creeping psychological effects, like mild depression... that slowly overtakes your personality.  At least that's my experience.  People have told me my personality has changed and I know that I have a lot less  enthusiasm and motivation...  but maybe it's just age or HIV dementia.

It seems to me that a lot of long-term Sustiva users have been making reference to "HIV dementia" long before it should be an issue.  Has anyone else noticed this?   
« Last Edit: November 25, 2010, 08:51:42 PM by wtfimpoz »
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Online Theyer

  • Member
  • Posts: 2,066
  • I love buying Furnature.
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #11 on: November 25, 2010, 08:16:07 PM »
I took sustaiva for approx two years. In the first month I had very disturbing nightmares. The 2 years where depressed eventually I decided to come off to see weather it would relieve my depression and because there was finally alternatives . It did relive the depression,though not before a manic dept inducing summer. Dreadful stuff for me but choice was limited at the time and it did keep my VL negative.
t
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Zohar

  • Member
  • Posts: 234
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #12 on: November 26, 2010, 09:47:32 PM »
I was only on Sustiva for a very a short and for each of those days I felt absolutely dreadful - as of I'd been drugged and could hardly function properly at all. I felt close to normal pretty much as soon as stopped taking it but it took many months for my short term memory to revert to normal.

I honestly think this a dreadful drug which unless they can modify so that it doesn't have thse CNS side effects, should be banned. No one should have to go through Sustiva-hell now that other drugs are available and if it hadn't been bundled into a a'convenient' once-a-day pill would have already fallen out of favour.
''Poor is the man whose pleasures depend on the permission of another.''

Offline tednlou2

  • Member
  • Posts: 4,608
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #13 on: November 26, 2010, 10:34:08 PM »
As previously discussed, I was on Sustiva mono-therapy for 4 days in the hospital.  I didn't know they were even giving it to me.  I wouldn't have known I was even taking it.  I don't recall feeling any side-effects or those dreams.  Perhaps 4 days wasn't long enough to experience any side-effects; however, I believe the first several days is when they say you would experience it the most.  Obviously that isn't always true as many here still describe side-effects months after starting. 

Anyway, I hope it works out for you and you don't have to change.     

Offline AaronbytheC

  • Member
  • Posts: 116
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #14 on: November 26, 2010, 10:57:45 PM »
Well I've only been on it 8 nights but so far I'm almost disappointed!   :o 

I read so much bad stuff before starting and was worried over nothing!  I have not had a single side effect unless you count that after three days the swelling in my glands had gone away and I honestly have more energy than I've had in months!  My partner I went on a 16 mile mountain bike ride yesterday morning and he commented how I kicking his ass on the hill climbs!   ;D

The first few days I was extra careful not to eat 3 hours before bed, not drink alcohol, not eat fatty foods, yada, yada, yada...  But now I'm starting to experiment.  On the 4th night I cut my "no eat" time to 2 hours, on night 5 I had my usual "after work beer" and still nothing!  Last night (Thanksgiving) I went all out!  My parents were over, we drank 4 bottles of wine smoked cigars, ate way too much food & pie and stayed up too late...  I really thought I was in for a night as I was stuffed and a little buzzed when I took my pill and went to bed, but this morning - Nothing!   ::)  I even got my a$$ out of bed early to hit some Black Friday sales at 5 am. 

I don't know why I'm having such an easy go of it but I am truly grateful! 

Footnote:  For anyone thinking of starting meds, it is true we all react different to meds.  The only way you are going to know what works for you is to try it yourself! 

04/2012 CD4 721 / 29% / VL UD
02/2011 UNDETECTABLE!
12/2010 CD4 587 / 24% / VL 210
11/2010 Started Atripla
10/2010 CD4 420 / 18% / VL 13,500
09/2010 CD4 541 / 17% / VL 10,500
08/2010 CD4 498 / 18% / VL Not Taken
07/2010 CD4 307 / 18% / VL 9,500
06/2010 Confirmed Poz
03/2010 Infected
06/2009 Neg

Offline natthai

  • Member
  • Posts: 130
  • The truth is not determined by majority vote.
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #15 on: November 26, 2010, 11:29:35 PM »
Interesting post. Does anybody know the mechanism of action of the "efavirenz-associated CNS side effects?" I have seen a lot of members talking about them and I have read a lot about this issue but I haven't been able to find any studies, scientific papers or commentary on how this drug produces those effects. Do other drugs in the NNRTI class have similar effects?

Wikipedia lists the following CNS effects:
Psychiatric symptoms, including insomnia, confusion, memory loss, and depression, are common, and more serious symptoms such as psychosis may occur in patients with compromised liver or kidney function.

I can understand how psychoactive drugs produce CNS effects but it seems that efavirenz is so specific in what it is doing that it isn't producting the effects directly.

tl;dr Does anyone have a good understanding of how efavirenz (Sustiva) produces CNS side effects?
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline OneTampa

  • Member
  • Posts: 2,032
  • "Butterflies are free."
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #16 on: November 27, 2010, 10:25:37 AM »
I have posted a number of times my experience with Sustiva.  I have been on it over 10 years at 400mg.  Most people take it at the full 600mg (especially as a component of Atripla) which may account for many of the problems some experience.

I have been able to tolerate Sustiva at the reduced 400mg dosage with no continuing debilitating CNS isssues (I had an inner ear infection in 2007 that ran for 6 days and affected my balance that was healed with antibiotics). I have vivid dreams from time to time that are pleasant--not terrifying.  There are no wild and erratic swings in emotions/behavior and I still have a weird sense of humor. ;D   Sleep is fine. I try to keep stress down and think, if an adverse situation is going to cost me a t-cell, forget about it. :)

Also, Sustiva has not compromised my cognitive abilities although I am known for my tendency to think outside the box (code).  ;)  I am able to function day-to-day with work, home life, and even managed to complete my undergraduate and graduate degrees. For all the money (out of pocket and employer funded) riding on my education, I thought it was best to have my ass in gear. ;)

I know that my comments resemble a played out recording on repeat as regulars to this Forum have read them before, but I am convinced that although these HIV drugs help many of us, there is something to be said for the variances in our experiences with them.  This may be related to any number of factors such as individual genetic makeup, type of virus, dosage level and adherence, and other co-factors.

Finally, with my case, the proof is in the pudding (as the saying goes). This coming January 2011 will be my 26th year HIV+ and past 11 years non-detectable. :)

I hope to keep on trucking for as long as I am able.

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

Offline Zohar

  • Member
  • Posts: 234
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #17 on: November 28, 2010, 07:55:33 AM »
''I have seen a lot of members talking about them and I have read a lot about this issue but I haven't been able to find any studies, scientific papers or commentary on how this drug produces those effects. Do other drugs in the NNRTI class have similar effects?''

I'd be very interested to know its mode of action too but have never been able to find anything which  explains it. Efavirenz is meant to have good 'brain penetration' so perhaps one can assume it's related. But it would be nice to know for certain what exactly the drug is doing. One would think that given how old the drug is, in HIV medication terms, they might have bothered finding out by now.

*sighs*
''Poor is the man whose pleasures depend on the permission of another.''

Offline OneTampa

  • Member
  • Posts: 2,032
  • "Butterflies are free."
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #18 on: November 28, 2010, 08:50:11 AM »
There appears to have been some scientific research regarding Sustiva and the impact on the CNS, blood brain barrier and population variances.

CNS Adverse Effects with Sustiva:
http://www.atypon-link.com/PPI/doi/abs/10.1592/phco.22.11.930.33624

Sustiva and the BBB (Blood Brain Barrier):
http://www.springerlink.com/content/r70872k08766615v/fulltext.pdf

Blood Brain Barrier and Antivirals:
http://onlinelibrary.wiley.com/doi/10.1021/js990174i/abstract

Impact of Population Variances and Sustiva Treatments:
http://journals.lww.com/aidsonline/Abstract/2008/09120/Clinical_impact_of_patient_population_differences.5.aspx
« Last Edit: November 28, 2010, 09:03:08 AM by OneTampa »
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline Hellraiser

  • Member
  • Posts: 4,110
  • Semi-misanthropic
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #19 on: November 28, 2010, 12:14:55 PM »
I've been on Atripla for a little over a year now and the first 8 months were great, but now I'm beginning to experience anxiety, paranoia, and depression.  I don't know if this is amplifying some pre-existing stuff in my life or if I'm just imagining it, but it's definitely becoming more pronounced, at my next doctor's visit I'm definitely going to be asking about changing my medication.

Offline OneTampa

  • Member
  • Posts: 2,032
  • "Butterflies are free."
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #20 on: November 28, 2010, 01:06:14 PM »
You may also find the following medical report brief on Sustiva and the correlation of adjusted dosage, pre- and non-disposition to patient mental issues relevant:

http://www.journals.uchicago.edu/doi/pdf/10.1086/427031
« Last Edit: November 28, 2010, 01:08:17 PM by OneTampa »
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline ElZorro

  • Member
  • Posts: 535
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #21 on: November 28, 2010, 01:18:39 PM »
Thanks for the post, Tampa. I wish I'd seen it before I opted for Atripla. No one told me that 54% of patients develop adverse CNS effects. Had they, I never would have spent any time on it. Hopefully, no lasting damage was done. Towards the end it was becoming unbearable. Gladly, I'm off of it now.  :-\

Good luck to you, Hellraiser  :-*

Offline mecch

  • Member
  • Posts: 10,736
  • red pill? or blue pill?
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #22 on: November 28, 2010, 06:16:19 PM »
And the weirdest thing about my HIV specialised ID doc was he poo-pooed my complaints until I insisted he change my prescription.  A few months afterwards, I called him on that and he said it was his mistake not to have responded - but how could he not know of these known effects?? - and that he wouldn't make another one. So I stick with him.  Basically so far I think the HAART cured all my HIV troubles and I should probably switch doctors soon. I was waiting for him to sign the confidential "fitness to work" attestation he had to do to the state doctor, so I could get my new job.  That just came in this week.
Honestly, I sometimes wonder what doctors have as a secret agenda in their attachment to sustiva truvada (Atripla) as first line therapy.  I am sure there are many rational reasons and historical reasons for this being the case.  And I guess so many success stories.  But it would be nice if the medical establishment was upfront about the potential effects and didn't give patients such a hard time for not wanting to try it, or stay on it.
« Last Edit: November 29, 2010, 11:31:58 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

  • Member
  • Posts: 10,736
  • red pill? or blue pill?
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #23 on: November 28, 2010, 06:18:02 PM »
I've been on Atripla for a little over a year now and the first 8 months were great, but now I'm beginning to experience anxiety, paranoia, and depression.  I don't know if this is amplifying some pre-existing stuff in my life or if I'm just imagining it, but it's definitely becoming more pronounced, at my next doctor's visit I'm definitely going to be asking about changing my medication.

Dear, try to get off this drug.  Its know to cause more problems with people who have a history of anxiety or depression so if this is coming on again, why not switch, if possible.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline yipiee

  • Member
  • Posts: 19
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #24 on: November 29, 2010, 02:35:18 AM »
I've been on atripla since Jan 2010... my first drug, newly diagnosed... life was stressful, and really BAAAD ... so when i had to go on anti-depressant, i thought it was just life overwhelming me. Even when I finally asked for help with the depression, the doc didn't say it wasn't connected to my meds... but I really think it was.  In retrospect, and doing research on my own, i learned about the BBB, and that is exactly where and why Atripla works...  and also where the sertaline (zoloft) works as well.

I don't want to be on anti depressants forever... but i couldn't live with the depression as it was.  I am "stable" now, and am thinking of testing the theory, and try to cut back my anti-dep dosage in Jan ... with the advisement of my doc, for sure.

I also noticed my equilibrium has gotten wonkey.  Has anyone else experienced this?  I told the doc, but they didn't think much of it.
K


Offline Ann

  • Administrator
  • Member
  • Posts: 27,947
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #25 on: November 29, 2010, 10:09:58 AM »
You may also find the following medical report brief on Sustiva and the correlation of adjusted dosage, pre- and non-disposition to patient mental issues relevant:

http://www.journals.uchicago.edu/doi/pdf/10.1086/427031


Like the woman in this case study, my bf is also on only 200mgs of Sustiva and has been for quite a few years now. They didn't look for the CYP2B6 G516T mutation as far as I'm aware, but they did do therapeutic drug monitoring (TDM) on him before lowering his dose first to 400mgs, then 200mgs.

In conclusion, for persons who develop neuropsychiatric side
effects while receiving treatment with EFV, we recommend
keeping EFV in the therapeutic armentarium and lowering the
dosage, rather than simply stopping treatment with the drug.
Additional studies should be performed to evaluate whether
genetic investigations should be undertaken before initiation
of EFV treatment.


This conclusion is interesting for two reasons. One, they're recommending that people stay on Sustiva (who funded this study anyway?). We have to keep in mind that this study was accepted in August 2004 and we have more meds that have been approved since then, meds that don't have the side-effects Sustiva does. So I have to wonder if the authors would still recommend keeping Sustiva at a lower dose or if they would recommend a switch to something like Isentress. (again, who funded this study?)

The other thing I find interesting is the mention of genetic investigations being undertaken before a person is put on Sustiva. They already do this with Abacavir, so why don't they do it with Sustiva? It would save a lot of heartache.
« Last Edit: November 29, 2010, 10:11:29 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...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 tash08

  • Member
  • Posts: 86
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #26 on: November 29, 2010, 08:05:07 PM »
On Atripla since May' 2007, I have been suffering from depression since I was 19. It never made me feel more depressed, other than occasional headaches in the morning. But we are all different and it might have something to do with our own unique brain chemistry.
01/04/06-HIV-
03/09/06-HIV+
05/07-Atripla
04/01/10 CD4-681, VL-UD
07/10/10 CD4-450, VL-UD
10/10/10 CD4-473, VL-UD
01/21/11 cd4-522, VL-UD
05/02/11 CD4-638, VL-UD <20 copies Hell yeah!
08/3/12 CD4-806, VL-UD

Offline alliance

  • Member
  • Posts: 159
  • hmmmm. . .
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #27 on: November 29, 2010, 11:39:42 PM »
Been on Atripla for a year now.  I take it nightly before bed. The morning grogginess lasted until recently, a few months ago.  I am still more introverted than I used to be in the morning, I really need my 8 hours of sleep now. I need more time to wake up. I used to function well on much less. I'm hoping I'm finally getting used to the drug, I was just about to request a change but, like I said, it seems like the morning fog seems to be going away gradually.
I think I show my emotions more now. I can't say how much of that is the drug and how much is just life. Watching myself closely for depression. No signs apparent.
Thanks for starting this thread and contributing, friends.
"The influence of each human being on others in this life is a kind of immortality."
10/10/12   CD4=378  %=32   VL=UD
5/10/12     CD4=426  %=32  VL=UD
11/15/11   CD4=296  %=29  VL=UD(20)
6/15/11     CD4=345  %=29  VL=UD(38)
3/15/11     CD4=317  %=31  VL=UD
12/1/10     CD4=315  %=28  VL=UD
8/11/10     CD4=250  %=25  VL=UD
6/10/10     CD4=380  %=24  VL=UD
3/4/10       CD4=340  %=22   VL=UD
1/11/10     CD4=312  %=22   VL =130
11/30/09   CD4=228  %=19  VL=1726
11/20/09    started atripla
10/15/09   CD4=281  %=18   VL=85,000

Offline alliance

  • Member
  • Posts: 159
  • hmmmm. . .
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #28 on: December 03, 2010, 12:51:51 AM »
So I went to the Doctor today. He was very satisfied with my blood numbers, both those in my signature and all the others he checked. We talked about switching meds, he offered me something to take twice a day without the side effects as a replacement. I decided to wait and think about it, not sure I could adhere to twice a day.  But it was a good day at  the doc's office.
Wishing you all well-
"The influence of each human being on others in this life is a kind of immortality."
10/10/12   CD4=378  %=32   VL=UD
5/10/12     CD4=426  %=32  VL=UD
11/15/11   CD4=296  %=29  VL=UD(20)
6/15/11     CD4=345  %=29  VL=UD(38)
3/15/11     CD4=317  %=31  VL=UD
12/1/10     CD4=315  %=28  VL=UD
8/11/10     CD4=250  %=25  VL=UD
6/10/10     CD4=380  %=24  VL=UD
3/4/10       CD4=340  %=22   VL=UD
1/11/10     CD4=312  %=22   VL =130
11/30/09   CD4=228  %=19  VL=1726
11/20/09    started atripla
10/15/09   CD4=281  %=18   VL=85,000

Offline justaguy

  • Member
  • Posts: 83
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #29 on: December 06, 2010, 12:41:29 AM »
Been on Atripla about 19 months.  The first night was killer and I wasn't sure it was going to work, but after that, it's been easy.  I never used to remember my dreams, but now I have vivid dreams regularly - nothing scary either, so in a way it's a nice side effect.  One thing I've noticed lately is that my memory seems to be worse.  I can't remember lots of things without writing it down, but that could just be me getting older. :)
Estimated infection: 3/2008
Tested HIV positive: 3/31/2009
CD4 136/unknown %/VL 150,000: 4/6/2009
Started Atripla 4/17/2009
CD4 255/19%/VL 409 5/27/2009
CD4 247/??/VL 161 6/27/2009
CD4 257/21%/VL 60 7/22/2009
CD4 352/22%/VL Undetectable 10/21/2009
CD4 490/27%/VL Undetectable 2/15/2010
CD4 397/?/VL Undetectable 7/2/2010

Offline bufguy

  • Member
  • Posts: 159
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #30 on: December 07, 2010, 10:43:01 AM »
I've posted about my own issues with the stuff in the mental health forum before.  From what I read on here, almost no one manages to endure the stuff for too long.  Somehow though, it remains the number one prescribed HIV med.  Happy Turkey Day to everyone in the US.


I've been on it for 2-12 years, and other than the first week...no problems. Most people I know who are on Atripla also have no problems.
I thank God for such an easy, effective med.
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 jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #31 on: December 07, 2010, 10:57:54 AM »
As I just finished mentioning in a tl:dr post in a tl'dr thread, my own experiences with Sustiva were profound and life-threatening. But with any drug, YMMV.

In me, I did not mind the vivid dreams (always had them anyway) and dizziness (ditto). But after several months on the drug, the truly nasty CNS effects settled in. Had I not been cognitively aware of my natural states (such as it is) and enough of an asshole to defy my doctor (who, in retrospect, was a sanctimonious and dismissive prick) I would absolutely not be here today (to the delight, I am certain, of some).

Sustiva was the only drug I have ever taken so far whose negative effects took months and months to surface, long after I had written it off as a great success. It DID help knock my VL to undetectable, and my CD4 count skyrocketed.  So at least my blood, when swept off the street, would have been relatively benign.

Does not happen to everyone. Roughly half seem to have issues, and of that half, not sure how many take a long time to manifest. And like I say, for those who do not experience these issues, it is really a miracle drug. For those without an underlying mood disorder or chemical imbalance, it seems pretty benign from a CNS standpoint. Of course, underlying is the key word, in that we just don't know.

I am interested in the tests given nowadays to determine a person's potential for CNS effects. Also, the lowered dosing. Sadly, I think that ship has sailed where I am concerned, as I think I am resistant.





"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."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline RapidRod

  • Member
  • Posts: 15,193
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #32 on: December 07, 2010, 12:24:21 PM »
Been on one or the other for five years. Sleep issues is the only downfall downfall that I've really had.

Offline phildinftlaudy

  • Member
  • Posts: 2,949
  • sweet Ann what you think babe...
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #33 on: December 07, 2010, 12:38:25 PM »
Been on one or the other for five years. Sleep issues is the only downfall downfall that I've really had.

and some minor repetition of words  - SMILE   ;D
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 natthai

  • Member
  • Posts: 130
  • The truth is not determined by majority vote.
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #34 on: December 10, 2010, 06:04:45 PM »
Speaking of "downfalls" ....One on my best friend who tested positive a month before me just started Atripla yesterday. His numbers were around 300 for several months and so it was time for treatment. He took the first dose in the morning and he got so dizzy that he fell down at work and had to go home. He is a financial analyst as a big bank so you can imagine how worried he was about it. Also he haden't had any symptoms aside from the low CD4 lab results so he wasn't expecting anything like this.

I didn't realize that the reactions could be this severe. Has anyone else has a really bad reaction like this one? Is there a warning for Atripla like they have on some psychoactive medications "don't take this while operating heavy machinery."

I will call him tonight and see what his doctor said about it.
« Last Edit: December 10, 2010, 06:06:59 PM by natthai »
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline MitchMiller

  • Member
  • Posts: 453
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #35 on: December 11, 2010, 12:32:30 AM »
Wow.. I can't imagine a financial analyst would be so uninformed to take his first dose of a drug containing 600mg of Sustiva and go off to work!   Does he have a "superman" complex.. or is his doctor so incompetent that he didn't at least warn the poor guy about what most people go through at least on their first dose?
 
My first dose had me feeling like I was on that cruise ship tossing around last month in the Antarctic!

Online leatherman

  • Member
  • Posts: 5,922
  • Google and HIV meds are Your Friends
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #36 on: December 11, 2010, 01:28:43 AM »
I didn't realize that the reactions could be this severe..
all the meds are listed here (http://www.aidsmeds.com/list.shtml). click on any of them to get full information - like side effects, drug interactions, etc. You should turn your friend onto this site. Maybe check out the lessons too. ;) http://www.aidsmeds.com/articles/Introduction_4702.shtml

"Many patients have dizziness, headache, trouble sleeping, drowsiness, trouble concentrating, and/or unusual dreams after starting treatment with Atripla. These feeling may be less noticeable if you take Atripla at bedtime on an empty stomach. They also tend to go away after you've taken the medicine for a few weeks"
http://www.aidsmeds.com/archive/Atripla_1577.shtml
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online GSOgymrat

  • Member
  • Posts: 4,962
  • HIV+ since 1993. INTJ
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #37 on: December 11, 2010, 09:52:55 AM »
My partner has been on Sustiva for years. He says he has not had any CNS problems.

Offline David_CA

  • Member
  • Posts: 3,232
  • Joined: March 2006
Re: Atripla/sustiva users, were the CNS side effects tolerable?
« Reply #38 on: December 12, 2010, 12:09:16 PM »
Hubby and I have both been on Atripla for 4 years and don't have these CNS issues.  He takes his at night like most people, and I take mine in the morning.  I know quite a few people on Atripla, too, who don't have the reported issues.  I guess we're just fortunate!
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.