POZ Community Forums
Meds, Mind, Body & Benefits => Mental Health & HIV => Topic started by: animalleader on December 27, 2011, 10:04:55 pm
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Howdy all, brief rundown: Prior to going on Atrilpla, I was taking Reyataz/ddI/Emtriva and did very well. That was in a gov't study which was closed down due to morbidity and mortality. Since the Atripla -- actually, I started in a study with Sustiva and Truvada separately -- I've lived in a daze, a physical and mental morass. Sometimes it's even painful. This has been about four years now. Atripla works well enough so I don't want to switch meds, I've already switched once on account of the study. I've been treated for manic depression (euphemistically called "Bipolar NOS" now as you all know) since the mid-90s, lamotrigine (350 mgs/day) and the clonazepam (2 mgs/day). I take the Atripla and clonaz at night, either 1 am or 2 am depending on when I get home from work. I work second shift. I can't take the Atripla any time during the day because it whacks me out to the point where I can't really function, and I need to sleep away the side effects. I can't sleep without the clonaz. My lamotrigine was increased a few years back because I developed neuropathy (feet). Anyway I'm starting ritalin today, 10 mgs 2 times/day but starting with half a tablet, and I've looked through the threads on ritalin and they're a bit old, so I'm wondering if anyone can share some insight into this particular (or similar) archipelago of pharmaceuticals and conditions. Basically, lil' help?
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I am not bipolar.
My first combo was Sustiva and it didn't work well for me. I was able to switch to others and the "sustiva crazies" were history. Is there some reason you never tried a different combo, besides the fact that your combo "works."? Some reason you could not try another to see if the mind would be clearer?
As for the ritalin, I can give you some good experience. I started taking it several months ago and found it did what its supposed to do - better focus, sticking to tasks.
But again, I am not bipolar. And currently on isentress and truvada.
Hope this helps.
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Well I'm leery of switching as I've already been on one regimen, Sustiva/Truvada is my second; I'm not a fan, at least for me, of switching around. I should add that there is a physical component to the Atripla effects, not just mental. Anyway I'm going to give the ritalin a chance and hope to see an improvement in the quality of my life. Others please weigh in with advice, my situation can't be so unique ... well, you know.
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Sustiva really is not an optimal treatment for someone who has depression issues like being bi-polar. Although it may be working for you from a virological point of view, it's obviously NOT working for you mental health-wise or quality of life-wise.
If the Sustiva portion of your combo is making your life a misery - and from what you've written, it IS making your life a misery - then it's broken and you need to fix it. It's not a bad thing to switch meds if they aren't working for the WHOLE of you.
You can keep the Truvada portion of your combo and try one of the other once-a-day combos. For instance, you can add Reyataz boosted with Norvir to your Truvada.
If you're not a fan of switching meds because you're worried about resistance issues, please think again.
When you change meds under a doctor's supervision and go straight from one combo one day to the new combo the next, resistance simply is not going to be a problem. If/when you switch the Sustiva out for something else, you WILL be able to use it again in future if you need/want to do so.
Please don't be afraid to switch. Virological success isn't the only measure one needs to consider - quality of life is VERY important as well.
And please, remember that we have long term survivors in these forums who have changed their combos more times than some people change their underwear and they're doing just fine - and in most cases, they're doing MUCH better due to the changes they've made.
Change is very often a GOOD thing, so please consider it. At the very least, discuss it with your doctor.
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I have to agree with Ann (I always agree with Ann :-*). I was diagnosed over 20 years ago and have been on many, many different HIV meds, including the first ones ever used. Sustiva does not work for me, and I switched combos because of the psychiatric side effects of same. I now take Isentress and Truvada and have been virtually side effect free.
I do know if I was having to add meds like Ritalin to deal with a side effect of an HIV med, I would definitely switch combos. While amphetamines can be truly helpful for someone who has a true case of ADD/ADHD, they can be detrimental for those who do not. I can tell you when I was using a prescribed amphetamine for what was not a true case of ADD I ended up being very paranoid (which is typical of any amphetamine long term) and having hallucinatoins, both auditory and visual. Not that the latter is typical, but it can happen. Plus they are physically addicting. Not saying they shouldn't be used for any condition, as obviously the benefits for ADD/ADHD outweight the risk of possible side effects, just saying I wouldn't take this type of med to deal with a side effect of something that can be switched out for a better combo.
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Thanks everyone for the input. Yes, the idea I had was that the Sustiva/Truvada works from a virological point of view. My doctors were aware of the mental health issues going into it; they were not terribly concerned about the possibility of problems because, as I grilled them to the nth degree at the time, they said in their practice they had seen little discouraging effects with CNS effects vis-a-vis mental health issues with Sustiva. The choice I had at the time was to quit the study, or continue on the Sustiva/Truvada arm. I chose to continue, because all my health care was free through the study, and also to see the study through. But you are all also correct in that I've paid a personal price via quality of life, or lack thereof. There is every possibility I have an attendant ADHD element to my psychology; two shrinks back, about 10 years ago, I did have one who saw me that way. I knew he was trying to gear his practice towards kids and thought he might have been fishing and mistreating me, so I did not follow through with him. At any rate, what I'm going to do is this: since there's no possible way I can see my ID doctor until my next appointment (Jan 30), I'll give the ritalin a little window to work or not work. It's going to do what it's going to do. On the 30th I'll talk to my ID doctor. Mind you, I'm still not completely comfortable with making alterations to my HIV meds at this point; I've been on 5, in one combo or another, and a near-death PCP with a CD4 of 70 and VL of 1,000,000 at one point, so I hope you see why I'm happy, as it were, to stay with something that is keeping HIV in check. But we'll see. My thought is to give things a chance to work or not, and take it from there. Any other experiences I'd love to hear --
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This sounds like more info
In other words you felt compelled personally and pressured by docs also to stay on sustiva because of the study.
Is it financially the only way you can continue treatment?
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This sounds like more info
In other words you felt compelled personally and pressured by docs also to stay on sustiva because of the study.
Is it financially the only way you can continue treatment?
I don't feel I was pressured by my doctors. I could have dropped out at any time. I do have and had at the time private insurance through work. But it was great getting all my medical care off the books, so to speak, for over five years. And absolutely everything was folded into the study except psych.
Now ethically, and personally, that's a different matter. The study compared morbidity and mortality amongst first- and third-world cohorts taking the same meds. Staying in the study meant people in the third world would get first world drugs. Period, end of discussion.
It's really hard to parse my situation out, pharmaceutically. Since I've never missed a dose of the truvada/sustiva combo from the study or the proprietary Atrilpla I take now, never took a drug holiday, I can't tell you how I'd feel off sutstiva. There must be some interaction with my psych meds. Then there's the natural history of HIV and the brain, and who knows what that's doing? I've been seropositive since at least 1997, when I went on a huge manic sex and drug and booze binge. (I'm a monk now, so sadly straight it's scary.) Interestingly, vis-a-vis the Ritalin, one of the only drugs I wouldn't get near is meth, and I lived in San Francisco at the time so you can imagine what a nightmare that was.
Anyway, I'm three days into the Ritalin (5 mgs 2 x day) and so far it's okay. As I said above, I'll talk with my doctor next month about the pros and cons of changing HIV meds. If anyone else has had a similar experience I'd love to hear about it.
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I can't tell you how I'd feel off sutstiva. There must be some interaction with my psych meds. Then there's the natural history of HIV and the brain, and who knows what that's doing?
Maybe sustiva interacts with psych meds. OR MAYBE NOT. We know is screws with certain peoples minds, their CNS, directly. Independent of other meds around. Which is what some of us are telling you. Its time to try some HAART without sustiva.
It was kind to consider how staying on sustiva was helping someone in the third world. But now its time to look after yourself.
Also, I worry that you are worried about brain fog because of HIV. These are things to be addressed directly with the doctors and something is rotten in denmark that you are still on Atripla when going off it, and noticing a change is clarity, is going to rule out your feared "hiv induced brain fog."