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Author Topic: after long term use of sustiva/truvada/atripula lots of confusion and anxiety?  (Read 4274 times)

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Offline new_to_this

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My partner after 7+ years on these meds is experiencing som pretty profound confusion and anxiety, it has been coming on for the last couple of years, but has gotten a lot worse in the last year....to the point his job is in jepordy.  His cd4 count is 1064 and he has been undetectable for about 6 1/2 years.

When i take him to psyc drs, they tell me its some HIV related mental disorder(cant remember the name right now) but it looks like it relates more to people whos VL are not undercontrol.  So now we are starting to talk about switching his meds, but I am not sure that is the right course, so I thought I would post here..has anyone had this hqappen and what did you do to resolve it?

Also, some days he is very near normal, but when its bad, he isn't sure what day it is or doeswnt know the diffference between going to an ATM versus going to the bank counter...he seems to have problems with instructions like go to the atm and get $20 and go to the grocery store and get bread...when he tries that, god only knows what he will come home with.  I have wondered if the real cause is the anxiety?

I

Offline meherenow

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Hello,

I am sorry to hear of the difficulties your partner is experiencing and the obvious worry that this is causing you. I will say here that I do not actually know anything about this treatment apart from my own experience of it and from what I have read on here. I hope that those who are more experienced will be able to offer some pearls of wisdom.

However, I do sometimes worry that some doctors find blaming the HIV or the treatment when it is an easy option to do so. I think I would be tempted to seek the guidance of a sympathetic family doctor and especially one with more than a superficial knowledge of HIV and its treatment. another suggestion, which is what I would do in your situation, is to contact the manufacturer and put your case to them and ask for more information about possible links between what you are experiencing and the treatment that they are supplying. It seems to me that you are embarking on a project and I suspect that you will have to work hard and push continuously and get some answers.

I have a friend who's husband has just reached 50 but she is very worried because he does things like you describe. He is not having treatment for anything but similar things are happening to him.

The other thing is, if it is related to his meds then it is simple to switch and in theory it should resolve the problem quite simply.

I take Atripla and I do get the central nervous system side effects but I just sleep through it and it has progressively got less noticeable over time.

This all comes with the obvious caveat that Atripla is a drug that is still relatively new and from what you have said it sounds like your partner has been on it for most of the time that it has been available. I doubt there are huge numbers of people who have been on it as long, and even fewer who have been on it longer so it is unlikely that there is sufficient knowledge existing to either prove or disprove any link with Atripla. This is another reason why I think it is important to try and address your suspicions with the manufacturer.

I will be watching this post with great interest and wish you luck with you endeavours to get to the bottom of this.

Cris

Offline mecch

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When i take him to psyc drs, they tell me its some HIV related mental disorder(cant remember the name right now) but it looks like it relates more to people whos VL are not undercontrol.  So now we are starting to talk about switching his meds, but I am not sure that is the right course, so I thought I would post here..has anyone had this hqappen and what did you do to resolve it?

Does he see an HIV Specialist?  Even if he doesn't!  He should be looking for and getting answers that he and you can both understand.  Sounds like there is not enough information going both ways - patient and doctor.

Why are you hesitant for him to switch HAART? For example.  What does the doctor say about that. 

There are some people who basically dont deal very well pyschologically with sustiva so maybe a switch might be in order.  But his confusion sounds very serious and sounds like a specialist HIV doc and a shrink should be involved and talking to each other to get some answers and relief.  Is that possible in your situation?



“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline new_to_this

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Yes he has an ID doc, and his position is he is doing great on Atripula, VL undetectable and cd4 of 1064 and to him that means there is no way its the meds, and he is sure there is now way to develope side effects like this after being on the meds for this long.  His Neurologist, believes it may very well be the meds..his MRI was normal.  The shrink said it was hiv encephalopathy but that really doesnt fit because his VL has been undetectable for so long.  Right now all the doctors are pointing to the doctor on the right and blaming what he or his meds are doing.  Between that and the endless game of hurry up and wait(anywhere from 3 to 6 weeks between appointments...and no way to get anyone to move this process faster.. I have tried!!)

It looks like he is going to have to take a leave from work to try and preserve his job.  I did take him to my doc and he said that he has seen this with depression, so we finally got them to schedule a neuro psych evauluation...of course...the soonest is 2 months away...  This game is getting very old of hurry and wait.

Offline Ann

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Hi I,

First - would you please clarify something? In the title of your thread, you say "long term use of sustiva/truvada/atripla". I hope he's not on all three? The combination of sustiva and truvada into one pill is the med called Atripla. This means he should either be taking Sustiva and Truvada together or Atripla alone. If for some odd reason he is taking all three, that right there would be the source of the problem as it would be twice the normal daily dosage of Sustiva.

However, assuming that he is on one or the other, it will still likely be the Sustiva causing the problems. These types of problems are actually quite common for people who take Sustiva and sometimes it takes a while to manifest, like it has for your boyfriend. So just because it hasn't happened before now doesn't mean it can't happen now.

One popular combo switch would be to keep the Truvada and replace the Sustiva with Reyataz boosted with Norvir. This is also a once-daily dosing schedule. Another replacement for Sustiva is Viramune.

Please do speak to his doctor about this. There is no good reason why he has to stick with the Sustiva when it is obviously causing him problems.

Good luck and please, do keep us posted. And of course, feel free to ask more questions about possible replacement combos. He doesn't have to suffer like this!

Ann
« Last Edit: October 24, 2010, 08:04:52 AM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline new_to_this

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Yes, he was on just Sustiva and Truvada until Atripula came out and then they switched him to the Atripula.  I am glad to hear you say it may take a while for it to manafest, because his doctor sure does not think that is the case...in fact he is quite defiant its not his meds...and it was my first thought as to the culprit.

Thanks for the vqaluable input!
Jon

Offline Ann

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You're welcome, Jon.

I wish I could remember some specific names, but I'm know I've read several people posting in these forums say that they went for a few years before starting to have some of the typical neurological side-effects of Sustiva and that they continued to get worse over time until they made a combo switch.

If you have the time and patience, I would suggest using the site search engine and go through the myriad of posts on Sustiva side-effects. I'm sure with a bit of perseverance you'll find a few of the ones I'm recalling. Good luck.

And remember the bottom line here is, he has the right to change to a combo that will be more user-friendly for him. Sure, the doctor should have some input, but at the end of the day it's your boyfriend who has to live with this day in, day out, and he has the right to be mentally healthy as well as physically healthy. There are too many combos out there today to have to put up with one that is affecting his quality of life to the point of fearing for his job. Again, good luck with getting this sorted.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline new_to_this

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One more question, if we switch the meds, how long till we would know if that was the issue or see the symptoms disappear?

Offline ElZorro

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While I'm happy that Atripla works for many, I feel like such a boob for having stayed on it for as long as I did when I knew I was experiencing some CNS issues. Basically, I was more afraid of abandoning something that was effective in favor of an "unknown".  This link contains a section that describes the possible CNS issues that sustiva can cause (What are the Central Nervous Symptoms Like?). In retrospect, I realize I was experiencing 3 of 5 of these.

I'm with Ann. If the drugs are messing with quality of life, talk to a doctor about other options.

http://www.projectinform.org/info/meds/sustivatips.shtml

Offline new_to_this

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Wow, he has 4 of the 5!  But according to the docs you cant get side effects after being on a med for years(they showed up after about 3 years).  How long after switching did you get relief?

Offline ElZorro

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(knock on wood), but today is my third day off of Atripla and I feel amazing. I've been sleeping like a baby and waking up feeling fully re-charged...Hopefully, that will continue to be the case. Labs in 4 weeks to make sure it's a good switch  ;)

Offline mecch

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Sorry but his doc sounds like a stubborn professional. THere is no reason he shouldnt switch to another combo to see if it brings relief, and this switch should happen quickly, before he has to wait months for other specialists.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline new_to_this

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So I take it no one believes what the drs are telling us, and the side effects can show up at anytime?

Offline ElZorro

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I'm not a doctor and I've never played one on tv.

I made the decision to switch based on feedback from members in this forum, their experience, and a discussion with my own doctors. I was actually on the fence and planning to switch at the end of the year, but my doc basically told me "no time like the present" because she knows I'd been battling those CNS issues.

Offline mecch

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I wouldn't go so far as to say I don't "believe" the doctor(s).
But I do know for a fact sustiva can drive a few people bat shit. And for a fact there are people who stuck with it longer than they would have liked, when in retrospect, after a switch, they got their sanity back.
I fortunately switched off it rather quickly.

I have had the experience of doctors pointing to the next doctor rather than digging in and finding an answer.  It is frustrating that it takes some time to get the information to move around.  One thing I found was that my shrink - being an MD - had the authority to call other doctors into the conversation.  The patient unfortunately has to be very active in this "facilitation" of dialogue because in some situations, such as mine, and it seems yours, doctors don't really want to take all that time.  They are just overworked professionals like anyone else so you have to push them to do something extra.  Sad but true.

On the other hand, I am sure there are other possible causes for your bf's mental confusion and its worth getting a brain specialist onboard when the schedule permits it.


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline new_to_this

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The Neurologist also seems to think its the meds...or at least a leading culprit.

Offline ElZorro

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I will add that I confirmed with my doctor that if for some reason the new regimen didn't work (for whatever reason), I'd be able to go back to Atripla since I knew it was working and was assured that was the case. So, if the docs think it's the meds....well?

Offline mecch

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  • red pill? or blue pill?
The Neurologist also seems to think its the meds...or at least a leading culprit.

So is your partner scared to change because Atripla works? Listen, all the other combos work, too. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline new_to_this

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I think that he is leary of a med change, due to none of his drs having a solid answer about what is happening to him and it making things possibly worse, and the fact that its only a guess that its the meds causing all these issues.

We meet with the local AIDS group to talk to them about what his options are as far as taking a leave from work so he doesnt lose his job, and then meet with his ID dr this friday to discuss/chqange his meds.

Offline new_to_this

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I just spoke to the people at the local AIDS group and they said that they got the info back from his dr and he has it labeled as 'hiv dementia'.  So I am thinking I am going to have a fight on my hands to get him to change his meds...god this is SO frustrating, its all hurry up and wait for the next dr appointment and then they shove him off on another dr and no one is giving him anything to help.  I have started to give him some of my meds, some Ambien so he sleeps more than 3 hours and a half a clonazapam to help him with the anxiety and they are helping him some...at least its a small bit of relief... I am afraid they are going to railroad him on this.  The appointment is This Friday about switching the meds.

Offline Nevergivingup

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Hope this helps, I took sustiva for a year before I started having problems. I would take a shower and get out and leave the shower running all day, or water the back yard garden and lay the hose down and leave it running and flood the whole garden and one time so bad the neighbor called the police becasue water was rolling down the side of my house like a small creek and flooded the front street.

I wold also go to the store park the car and get out not lock it and leave it running. When I talked to the doctor he would assure me it wasnt the meds. My neruro. doc insisted it was the meds so after several months of going back and forth my Ex demanded they change the meds so the HIV doc did. And it got better.

My HIV doc still to this day will not admit it was the meds. Some doctors can be very stubborn they like to think they know all their is to know and truth be known they dont. I now have a HIV doc that is very upfront and honest and will admit what is known about all of the meds and hiv is very little compared to where they need to be and he also says everyone is differnt. Meds can affect everyone differntly in very strange ways. So my advice would be take the bull by the horns get the meds change there are alot of good meds out there that work and if need be get a new HIV doc.

Offline Hellraiser

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I'm actually beginning to suffer from severe anxiety and as this is completely out of my nature my first suspect is the meds.  I'm going to bring it up with my doctor at my next visit.  I've been a big proponent of Atripla for the newly diagnosed, but I'm not sure if maybe the stress of a recent change of environment is beginning to get to me or if I'm actually beginning to have some more severe side effects from Atripla.

Offline Nashvegas

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I steered clear of Atripla due to phych concerns, and I'm glad I did.  If I were your partner, I'd talk with my doctor about switching to Truvada and Isentress and leave the Atripla in the dust.  For some people, it's not just the right drug, and I think too many doctors prescribe it for all their HIV+ patients without considering other alternatives...
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline new_to_this

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Well, after battling it out with his dr, they switched him to new meds, reyataz, norvir, truvada.  Its been 2 and 1/2 days and he is showing some improvement already, so I have hope that he is returning to his normal self.

I still am amazed that his dr looked me straight in the face and said 'there is anecdotal evidence that Sustiva might be the cause'.  After the responses I have gotten from here, it sure seems much more than that!  Why are they so reluctant to see that these meds can cause these types of issues?!  You should not have to let things get this out of control to realize it might be the meds and at least try a change.

Again, thanks to everyone here that helped me, I needed all of your input to know to fight the dr to switch his meds, I couldn't have done it without you!!  Now, hopefully he will keep improving, but there are finally lots of hopefull signs!
Jon

Offline ElZorro

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'there is anecdotal evidence that Sustiva might be the cause'. 


"anecdotal"
!?!?!? I wonder if it's not time to consider a new doctor as well....

Glad it's working out, though!  :)

Offline Billy B

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Well, after battling it out with his dr, they switched him to new meds, reyataz, norvir, truvada.  Its been 2 and 1/2 days and he is showing some improvement already, so I have hope that he is returning to his normal self.

I still am amazed that his dr looked me straight in the face and said 'there is anecdotal evidence that Sustiva might be the cause'.  After the responses I have gotten from here, it sure seems much more than that!  Why are they so reluctant to see that these meds can cause these types of issues?!  You should not have to let things get this out of control to realize it might be the meds and at least try a change.

Again, thanks to everyone here that helped me, I needed all of your input to know to fight the dr to switch his meds, I couldn't have done it without you!!  Now, hopefully he will keep improving, but there are finally lots of hopefull signs!
Jon

Hello- Just wanted to jump in and ask why the Dr. did not use Isentress instead of reyataz & norvir.
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline new_to_this

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That was what I wanted him to switch it to, but he said that there is less brain penetration with it and he said he was starting to hear rubblings of it being less effective long term, but he said it was an option if this didnt work out, and after fighting with him to even agree to the change.....I ddint have the strength...lol.  So it is still an option down the road.

Offline ElZorro

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That was what I wanted him to switch it to, but he said that there is less brain penetration with it and he said he was starting to hear rubblings of it being less effective long term, but he said it was an option if this didnt work out, and after fighting with him to even agree to the change.....I ddint have the strength...lol.  So it is still an option down the road.

I just switched from Atripla to Truvada+Issentress, so I'd be eager to hear if anyone else has heard about rumblings "of it being less effective long term". That being said, though, based on other comments the OP's doctor has apparently made, I'm not sure he's very credible on the subject of HIV.

Offline new_to_this

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I could not agree with you more!  He didn't want to believe 'anecdotal' evidence about the Sustiva/Atripula, but runs from issentress on rumblings ... seems rather schizophrenic!!  And yes, once the dust has settled on all this, a new Dr is high on the list!

Offline ElZorro

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 ::)

If you can get him to backup his assertions, I'd be interested in reading what his "rumblings" are based on and what "long term" data has been published about this regimen that warrants him avoiding it. It's not like it's been around since Moby Dick was a minnow.

http://forums.poz.com/index.php?topic=34840.msg436023#msg436023

Offline new_to_this

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Intersting..I have to talk to him in the next few days for a status update, so I will see what info I can glean from him about where his info is coming from on that one....it will be interesting to see if there is something tangible or is it just 'anecdotal' (sorry, couldn't pass an opportunity to use his own words against him....lol)

Offline ElZorro

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Is this doctor an Infectious Disease (ID) doctor, an HIV specialist, or a General Practitioner (GP)?  I'm lucking in that I'm treated by the VA and, as such, have an ID staff that I deal with and a GP for other things. Thankfully, my GP will be the first to admit that he doesn't know "jack" about HIV and defers to the ID folks or other specialists that might need to be involved in my care. It really is very reassuring to hear a doctor say "I don't know...but, we'll find out together". ;)

Offline new_to_this

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His Dr is an ID and GP.... when things were going well, it worked out pretty well...guess you find out when things get tuff...

 


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