POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: ajm_ldn on January 15, 2007, 06:34:18 pm
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My ADHD makes it hard for me to concentrate and Ritalin helps me a lot. Now it's finally time for meds (after 9 years med free) and my doc seems to prefer Sustiva (it's the preferred backbone drug at Victoria Clinic, London). I'm not keen on taking something that could exacerbate my concentration probs and generally make me loopy/cranky. (Hey, I'm bad 'nuff already!) Also, I don't get why Sustiva is preferred over Viramune given all the CNS probs with it. But with Viramune, it seems pretty clear cut -- either ya have the allergic reaction and/or kidney probs, or ya don't. You know within six weeks, and if you make it through sans serious probs, well then you're home free with a pretty benign and effective regime (including Truvada). Seems simpler and less risky to me to just start with Viramune, skipping all the CNS wackiness. My VL is 120,000 and my CD4s are 275 at 12%
Any comments or feedback would be appreciated!
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Hey hello in England
Viramune - about 5% of people get a rash bad enough to stop/change, only 0.5% get a very serious reaction. Other than this, it'smuch nicer to the brain but perhaps a bit harder on the liver. Viramune can be done once a day if necessary (strictly speaking this is off-label), but possible if it helps with adherence, maybe an idea to start on 2 x day). Sustiva is gd if you are prone to forgetting cos it's so forgiving on timing. And truthfully, while many people get a bit trippy on the orange bomb, so it has a bit of a reputation, many people also find it okay, especially after the first few weeks.
Truvada (tenofovir/FTC) is the nukes they usually use with these drugs to start. If your kidneys are fine before you start it usually causes no probs (the tenofovir).
If 1 x day is important, another 1 x day drug worth looking at is Reyataz, which is the "nice" PI that don't raise your blood lipids, though I reckon starting on a PI at the Victoria will be a hard sell cos it's kinda not what the docs there like (this is a personal not a science thing, if another doc at Victoria says Sustiva is the best drug I's gonna shove 6 down his face, there's lots of equally effective drugs).
- matt (brighton)
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Hey Matt,
Thanks for responding. Wondering - is Viramune harder on the liver permanently, or just at the start and /or you have the bad reaction? If always, that may be an argument for giving la bombe orange a go. I guess I'd like to avoid even two weeks of being a nutter, if poss. Twice daily dosing is fine as I take vitas three times a day and Ritalin goes down like 4-5 times daily. Guess the ADHD thang has me well primed for being max meds compliant... :)
Andy
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Hello Andy,
As Matt has stated, some people can have a bad reaction to Viramune. I was started on it, back in October of 2003, and still on it today, along with Epzicom and Viread. So far so good. Never had a problem after starting, and certainly didn't have any of the dreams that one might get with Sustiva. I currently take mine, one pill, every 12 hours.( although I have taken both pills together) One at 8.00 am and one at 8:00 pm. I still manage to get an 8 hour sleep daily, with no problem. I work full time, and I don't seem to have too much of a problem, at least with the job i am doing daily. Of course, every once in a while a little edgy, but hey 21 years plus into this...
My doctor does liver function test, every three months. ( I also do not drink) Haven't for over 7 years, except for the holidays.
Also want to state, that I am on no other medication, except for the HIV meds, and Zocor.
Also from the this site in reference to Viramune ;
"Researchers have found that Viramune passes easily into the brain. This is very important because HIV can infect brain cells. Anti-HIV drugs that pass through the brain's protective barrier – called the "blood-brain barrier" – may help prevent and/or treat conditions like AIDS-related dementia."
http://www.aidsmeds.com/drugs/Viramune.htm
Good luck, Let us know what you decide-------Ray
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Well Sustiva can be hard on the liver sometimes, and Viramune is considered a little more likely to be hard than Sustiva, so it's a matter of degree of probability. It depends a lot on your physical make up. Some people's livers just react different to these kind of drugs, and end up with high levels of them in their body. But not most people. It's just a watch point really, like kidneys are for tenofovir and blood fats for PIs.
- matt
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Thanks Matt and Ray for taking the time to respond with helpful advice. I've got 3 weeks until the START appointment so maybe I'll do a liittle research and see how it goes. I like the way Viramune gets into the brain / cerbospinal fluid to help ward off potential HIV dementia. Looks like the long-term toxicities are fairly similar so slightly lean towards Viramune. It's hard to know how much to research or whether to just rely on the docs to figure it out! But I'm sure my natural curiosity will get the better of me and I'll be interrogating Ms. Google over the next few weeks... I guess if my test comes back showing allergy to abacavir, that'll push me even more toward Viramune as to take Truvada instead of Kivexa with Sustiva would mean not having a combo with as strong a penetration of the brain, so I read tonight. Clearly my past ADD probs have caused me to appreciate mental clarity - I can get fuzzy and stoopid enough when my Ritalin wears off without them HIV critters gnawing away on my brain! :P
Thanks again. :)
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Okay, so my START appointment got pushed up 'cause I reckoned the docs at Victoria were gonna be too slow / conservative about starting me on meds. The guy was even hemming and hawing about it on 12 Jan with my VL at 60,000 (down from 100,000+ the entire 1 1/2 years before, and my percentage at 12%) i.e. "Oh, maybe we should do one more test, just to be sure..." Reading the other posts, I'm kinda annoyed they had me wait as long at they did. Especially now that studies are indicating that if your CD4s go below 200 they never really come back up again to 500 (i.e. normal level). My VL has been 100,000+ for a year and a half, my percentages have been below 15% for over six months, and my CD4s have come in under 350 every time except once for over 2 years now. I've been asking every time, "Can I start?" Answer: "No, you seem okay..." One thing that does bother me is how the NHS sometimes tries to save a little money at the expense of your health! Anyway, I saw Dr. Pozniak, at the advice of a friend here who is poz, and was all ready with my academic papers and arguments for starting meds pronto, but didn't have to thanks to my CD4s plummeting to 150! In just 2 weeks from 275. Thanks NHS! Good thing they doinked around for 2 more weeks while another 100 CD4s vanished. "Just to be sure!" ::) So now I'm on Septrin as well as HIV meds. Excellent. Good thing I got pro-active on them or I might have wound up in the hosp with PCP! (Which could have been the case if I'd waited a month instead of insisting on coming back in 2 weeks.) Erm, NOT cost effective!
At least the people at Kobler were really cool, nice, professional and knowledgeable - especially Dr. Pozniak. Just wish I hadn't had to wait for my numbers to become so dire before starting. I wonder how much money the NHS saved keeping me off meds for an extra year while my immune system collapsed. Hope I can now stop feeling tired all the time and get my CD4s back up to a respectable level.
I'm in the 40% tax bracket and have been paying National Insurance for 3+ years so it's not like I'm exactly freeloading...
Anyway, just had to get that off my chest!
***Edited as my Sustiva kicks in and my coherence declines. lol***