POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: TimHere on December 12, 2006, 12:50:28 am
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It seems like my past prediction about Sustiva has already weighed out right. I am including a recent article from AIDSmap.org (12/7/06) Carter M
I dumped the horrid Sustiva/Truvada combo 10 days ago and feel like a
million bucks now. I am starting on Truvada/Norvir/Reyataz in 4 days. I
have a hunch this combo will work out beautifully.
Bear in mind that some folks do fine on Sustiva/Truvada and I am not trying to give any medical advise or freak anyone out... just reveal some cold, worrisome facts.
Here we go:
Many Patients Taking Efavirez Experience Long-term CNS Side-effects
AIDSmap.org (12/7/06) Carter M
A significant number of patients taking efavirenz (Sustiva) as a component of their antiretroviral therapy experience chronic neuropsychiatric symptoms, according to a small Australian study published in the November edition of HIV Medicine (7, 8, p. 544, 2006). Neuropsychiatric side-effects are commonly regarded as a short-term toxicity of efavirenz therapy, but the patients in the study had been taking the drug for at least six months, and were compared with comparable patients taking long-term HIV therapy that did not include efavirenz.
Approximately 50% of patients starting therapy with efavirenz develop neuropsychiatric side-effects in the first two weeks of treatment with the drug, and earlier studies have shown that up to 13% of individuals stop treatment with the drug at this time because of such toxicities.
Generally, central nervous system (CNS) side-effects develop after taking the first dose of efavirenz, but tend to disappear after a month of treatment. There is concern that a number of patients experience longer-term efavirenz-related CNS side-effects and that between 4% - 10% of patients treated with the drug discontinue its therapy because of chronic CNS side-effects.
Investigators in Sydney, Australia wished to determine the prevalence of long-term CNS side-effects in patients taking efavirenz as part of a stable antiretroviral regimen. They therefore conducted a cross-sectional, case-controlled study that matched individuals taking long-term (over six months) efavirenz with comparable HIV-positive individuals taking a long term antiretroviral combination that did not include this drug.
The investigators also used validated questionnaires to assess CNS symptoms experienced by patients in the study: the Depression Anxiety and Stress Scale (DASS); and the Cognitive Failures Questionnaire (CFQ), a tool to assess forgetfulness and aggression in daily life. The investigators also developed their own questionnaire to assess sleep disturbance, a commonly reported side-effect of efavirenz.
A total of 32 matched pairs were included in the investigators' analysis. Although the pairs were generally comparable, patients taking non-efavirenz regimens had been taking their current treatment for longer (mean 24 months versus 14 months, p = 0.001). Patients taking efavirenz reported higher levels of stress (p = 0.008), and there was a non-significant trend for patients treated with efavirenz to report more depression (p = 0.077), and anxiety (p = 0.083).
However, 19% of patients taking efavirenz reported "severe stress" compared to none of the individuals taking other regimens, a difference that was statistically significant (p = 0.014). Furthermore, 19% of patients treated with efavirenz experienced "severe to extremely severe" anxiety compared to only 3% of patients taking regimens that did not include this drug, and once again this difference was statistically significant (p = 0.05).
There was also a trend for patients taking efavirenz to report "severe or extremely severe" depression (p = 0.083). Further analysis of the stress scores showed that patients taking efavirenz had had more difficulty relaxing (p = 0.0029), became easily upset or agitated (p = 0.025), and were more likely to report being irritable or overactive (p = 0.009).
A significantly higher proportion of the efavirenz-treated patients reported unusual dreams in the last seven days (58% versus 32, p = 0.049), but quality of sleep was comparable between the two groups of patients. The investigators performed a second set of analyses because patients who were not taking efavirenz had been on their treatment for longer. But this did not affect the findings of their study. The study's investigators state that that is of "paramount" importance to find the clinical features associated with these side-effects so that clinicians can develop "improved management strategies".
My management strategy was not to "stay the course" to stop feeling like
shit and having my brains fried. If I had a choice to go to hell or take Sustiva again... Lucifer would definitely win out. But it doesn't have to be that hard... really!
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I've been taking the stuff since 5/2003. The article is pretty accurate in that the symptoms aren't nearly as bad as they were the first month... but they ARE still there. I've had one good night's sleep since 5/2003... the night I forgot to take my meds! I woke up and felt so good I knew I forgot to take them and my pill box proved me right. Recently, my dreams continue to take me way back into my childhood... often reminding me of things long forgotten. The problem is I would just like them to stop... maybe a good barbituate?
However, I am willing to put up w/the crap because I still think Sustiva is less toxic than some of the alternatives... and it works really well. I guess in the end, I'll be a raging lunatic with healthy organs.
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I've been taking Sustiva since 4/04 and absolutely love the enhancement it provides to my dreaming. I snap into lucid dreaming as the dreams intensify and I realize it's the Sustiva that's making the colors brighter, the flying faster, etc. The first time I took Sustiva I had a night of lucid dreaming that was the most intense and fantastic of my entire life, after that the effect lessened, but I hope to stay on it as long as possible. I'm somewhat disheartened that it takes so much conscious effort to really excel at dreaming, but taking a pill before bedtime accomplishes what years of dream work didn't.
I wonder sometimes when I experience cognitive blips or get a bit aggressive or impatient if the Sustiva isn't providing a bit of a rough edge to my personality. How can I differentiate between what would be my personality without Sustiva and what it is with Sustiva?
I have been aggressive in a couple of situations that I think warranted it, but had in the back of my mind that I could always plead a 'Sustiva defense' if things got out of control. I've also been very non-aggressive in a number of situations where aggression would be warranted and could 'blame' the Sustiva for that behavior. If I just look at the 'problem' situations and omit the normal times I feel I'd just be focusing on the bad side effects. The same applies for moments when my cognition blurrs, and then the times when I'm as sharp. Humm. I wonder if there could be a placebo-controlled, double-blind study constructed and performed where the patients reporting Sustiva CNS effects wouldn't know if they were actually taking the medication -- has such a study been conducted? It seems that patients knowing that they are taking Sustiva and reporting mental and cognitive side effects wouldn't be the most neutral source of information.
Darin
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I have not had any side effects except the drunk sensation at the beginning. Yesterday, for example I took my meds but 5 minutes later I could not remember If I had taken them, so I ate a piece of chocolate. One hour later I had the drunk effect...I went to bed really happy Knowing I have not missed a dose yet!
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Blondbeauty,
Ah, that 'drunk' effect! I get that too and enjoy it as a private pleasure in the moments before falling asleep. Strange that it's just about the only vice I indulge in anymore. I understand that in the California penal system, it's a problem in that a significant number of inmates prescribed Sustiva don't take the pills and trade them with other inmates for the neuropsychological effects, the inmates have to be observed taking the meds. Oh well, only the doggie to watch me take my Sustiva and no visitors, internet, trips out of the apartment or phone calls after dosing, cuz it make me all gooey and as you mention, drunk.
Darin
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The first time I took Sustiva I had a night of lucid dreaming that was the most intense and fantastic of my entire life,
Darin
please somebody send me one or two sustiva pills to uk??
i'll pay tru paypal, i want see those dreams! please pm or mail president@secretforces.eu
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I know everyone is entitled to his/her opinion, but I find that villifying a drug that has a pretty good track record is kinda not helping people who log in to this website with hopes of starting treatment. If I ever start getting severe reactions to this drug. I will just state them and say this drug is not for me. Every drug out there has some potential side effects. When choosing a drug regimen, lots of things have to be considered, scaring people is not simply informing them. I have had no major issues with this drug.
rob
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I have only been on sustiva for 12 months, but I am glad I am on this and not some of the other available drugs. I very rarely get any noticeable side effects from this drug, and things I could possibly attribe to the "meds" would likely happen if I was on meds or not. I think people can sometimes blame the meds for issues that may not exactly be med related. Having said that, anything is possible, but I for one am glad to be on this drug, and I am glad it works very well in supressing the virus, which for me is the main thing I care about.
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I'm glad they're finally figuring it out. Of all the meds I've been on over the years, Sustiva was by far the hardest for me. I spent an entire year of trying to stay the course only to end up feeling like a completely psychotic nut job. Within days of quitting it did I realize exactly how bad I felt. I am glad it works for others, but I think I'd take the projectile public vomiting of AZT any day over the weeks of insomnia, crying, shaking and paranoia that is our buddy Efavirenz.
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eeeekkk. this stuff scares the shit outa me! if u check out my other post im a virologic nightmare or as my doc calls it an oddity. im taking six yes 6 kaletra and 1 truvada a day still i wont suppress. and yet a pheno test shows no resistance or mutations. so doctor wizard is like okay well weve given you all this poison and it aint working and we dont know why so here take this poison to. and the new poisons name is SUSTIVA. my friends are like god dam...... thats a cocktail!
iv got the unopened bottle of it stuffed in a drawer. iv used every excuse i can think of not to take it. well the clock is ticking. apt w/ the doc this wed. & im sure were gonna come to blows.
yes i hear some talk about there not being any problems w/ this stuff & folks are overreacting. but i bet if you add all the positive and negative post; the negative far outweigh the positive. christ u cant even eat peanuts w/ this stuff<something about the high fat content>. the one post that scares me the most is dingoboys video blog about what misery he was in while on it.
so if u turn on CNN & hear about a mass shooting @ Squibb im gonna take the Sustiva defense....lol
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Fiercebend,
Just remember that the people most likely to post are the ones tha have something negative to say. As far as dingoboi is concerned, he strikes me as a person who abuses alcohol and drugs (no offense) from watching his video blogs. He always kept the wine running while doing his blogs and at one point was asking for party favors in a package he received from a friend. It is not a good idea to mix drinking with many drugs not just HIV drugs. As people with HIV, we have to make many modifications and accommodations to our lives in order to give these drugs the best chance to work. We can't always blame it on the meds. Some people will not be able to tolerate atripla, but by the same token som people can't tolerate bactrim (me included). Some will do great on it. If you look at most of the posts on this website I don't think you will find they are mostly atripla bashers. Many like myself are doing great. You could be one of them too.
rob
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rob.....yeeesh
i havnt even put a pill in my mouth. so im really in no position to make a factual comment. i just think ull have 2 agree u dont c all the misery about kaletra that u c about sustiva.
im just making a observation. btw.....i smoke weed 2 and dont c a major problem w/ it.
ooo oh iv stired the pot:)
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Well, actually,
I was going to get help from the weed gods because I had horrible nausea, and wasting. I still may if I do not gain my 30 pounds back. But, since I started meds, my apetite has returned, my diarrhea is controllable, and my nausea is limited, this after only three days on meds. I hope my labs are good on Thursday.
rob
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good luck ;)
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rob.....yeeesh
i havnt even put a pill in my mouth. so im really in no position to make a factual comment. i just think ull have 2 agree u dont c all the misery about kaletra that u c about sustiva.
im just making a observation. btw.....i smoke weed 2 and dont c a major problem w/ it.
ooo oh iv stired the pot:)
Well from almost 4 mos on Sustiva most of the reasons for the increased side effects seem to happen because of not foolowing the labeling directions, but I'm not saying thats everyone. For example the label says not to eat 2-3 hrs before taking Sustiva, and 1 hour after taking. I usually eat at 6:00-6:30PM and take it at 9:30 then If I miss dinner time I dont eat after 7:30 PM or wait til 10:30 PM.
But I have read that yes a certain percentage of patients develop short term CNS effects. Sustiva is one of the few drugs that I know of that also penetrates the HIV in blood brain barrier it may also penetrate other areas not really sure where else.
Yes some people cannot tolerate the side effects but Sustiva also seems to be less toxic on the liver than some other ARV's, and some of the side effects of other drugs Like PI's and AZT etc.. seem to cause things like Lipo, Buffalo hump, kidney stones etc...
The point is The Atripla for me is more tolerable, and better on my liver cholesterol levels for now. Until the drug either doesn't work or drives me crazy I'll stick with it for now.
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It knocked my virus down from 54K to 1k in ten days and it raised me 1 percentage point in cd4s. I can put up with a little drunkedness in the morning. Hope this is all I have to put up with.
rob
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I started on Sustiva at the end of November 2006. Prior to starting, I read all the stories about Sustiva and how bad it was for you. I took the pill and the first night was absolutely horrible because the drunken effect was so pronounced. The room literally was spinning for me all night and I couldn't sleep. It gradually diminished over three weeks and now the only time it affects me is if I am working late and don't allow enough time between dinner and taking the pill. For me Sustiva knocks me out in 10 minutes which is better than Ambien ever did. A little caffiene in the morning helps get over the groggy feeling if you can't get your 8 hours of sleep.
One thing I have learned about the meds is that we're all unique individuals and these drugs will affect each of us differently. The question youl have to ask ourselves is whether we're going to try it or rely on everyone elses experience.
Whatever the decision you arrive at, I wish you much success in your treatment regiment.