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Author Topic: Can cognitive problems from Sustiva be delayed for many many years?  (Read 2809 times)

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Offline SCCL

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Hi:

I'm new to this forum. It's great to know you're here for support and information. Sad to say I'm not that confident in my dr. I'm thinking about switching meds and would like to get your opinions. 

I'm 60. If you had asked me a year ago, I would have said I've had no problems with Sustiva/Atripla. Now I'm not so sure.

I started Sustiva with Epzicom in 2002 because of lipoatrophy. I switched from Epzicom to Atripla -- around 2007 -- because of general cardiovascular concerns with abacavir -- even though I don't have risk factors for heart disease, except I'm a male and 60.

I've had memory problems for about 5 years. I also often forget what I'm saying in the middle of a conversation. In the past 12 months, I've had a feeling of being spacey and slightly off-kilter. I've also started to feel depressed and a bit anxious for the first time in my life. I talked to 2 drs and they have no explanation. After reading this forum I'm wondering whether these problems are related to Sustiva?

1. Can Sustiva cause delayed progressive cognitive problems? I had no noticeable cognitive problems from 2002 to around 2009. 

2. Also, have people reported a spacey, off-kilter feeling from Sustiva? If so, could it develop 11 years after starting it? I'm not taking any other meds.

3. I'm also wondering whether the slight depression and anxiety might be related to Sustiva. But again, it only started after 11 years.

My Dr. can't explain what's going on. He's willing to switch from Atripla.   

Has anyone heard of this situation I find myself in?

4.If Sustiva is causing these problems will they go away after I stop? I know that people who do drugs or drink heavily over a long period can have life long cognitive problems even after they stop. I'm thinking of Ozzy Osborne.

Is there any evidence that Sustiva can cause this type of delayed progressive damage to the brain? Thankfully I'm not as bad off as Ozzy and I haven't used street drugs at all or consumed alcohol excessively.

This post is already too long so I'll post another question about what combo I should switch to.

I would really appreciate any help. Thanks so much for your time.


Offline Jeff G

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Re: Can cognitive problems from Sustiva be delayed for many many years?
« Reply #1 on: April 24, 2014, 05:58:05 pm »
Welcome to the forums . I am one that had significant problems with sustiva and Atripla that some of the problems happened 8 - 10 years into the treatment so yes ... it does happen .

I started a thread about it and it got some interesting reply's you may want to read about .
http://forums.poz.com/index.php?topic=47901.0

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Offline SCCL

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Re: Can cognitive problems from Sustiva be delayed for many many years?
« Reply #2 on: April 24, 2014, 07:24:29 pm »
Hi Jeff:

Thanks for the response. I'll read the thread.

Do the spacey, off-kilter problems -- 11 years after starting Sustiva -- sound like they could be related to Sustiva?

If you had memory problems, did that problem reverse itself after you stopped Sustiva? If so how long did it take?

I'm hoping permanent damage hasn't been done ...

Thanks again.



 

Offline Jeff G

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Re: Can cognitive problems from Sustiva be delayed for many many years?
« Reply #3 on: April 24, 2014, 08:00:42 pm »
Hi Jeff:

Thanks for the response. I'll read the thread.

Do the spacey, off-kilter problems -- 11 years after starting Sustiva -- sound like they could be related to Sustiva?

If you had memory problems, did that problem reverse itself after you stopped Sustiva? If so how long did it take?

I'm hoping permanent damage hasn't been done ...

Thanks again.



 

Your symptoms could be caused by the drug but I suppose you wont know until you try another combo . Im 52 ... I started noticing a sharp decline in my memory at about 45 and I do not think its improved or worsened since I changed from Atripla to Intelence / Truvada .

The things I noticed a dramatic change in was that I am not depressed and as anxious and I can sleep through most nights . I am much more clear headed and my lipids have improved . 

HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline mikeyb39

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Re: Can cognitive problems from Sustiva be delayed for many many years?
« Reply #4 on: April 24, 2014, 09:48:26 pm »
I would say yes to your question.  It only took about a year to start doing horrible things to me. Me switching to new medication was the best thing I ever done since having HIV.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

 


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