POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: ajm_ldn on March 04, 2007, 04:47:17 pm
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It has been 5 weeks since I started meds (Sustiva + Truvada), and a week ago my doc said to try taking it earlier since I was feeling tired and spaced out the next day.
Well I did and I feel soooo high, it's like I smoked a phat doob or something. It's kinda fun, but what's this about side effects going away within 2 - 4 weeks? Evidently, not for me. I mean, I feel so high that I wouldn't even consider driving anywhere. This is crazy!
I took it at 6PM on a totally empty stomach, and by 7:30PM I was stoned. I still am quite stoned and it's 9:30PM. I'm not talking just a little dizziness either. I feel totally whacked out. Fun, but not every day.
What do people think - - How long should I keep taking this stuff before just switching to Viramune?? I really don't mind taking something twice a day, and it would be nice to have my mind back. ;-)
Why would anybody put up with CNS side effects if there's Viramune? My liver is fine. In fact, since I stopped drinking at end of December (in prep for meds) my liver enzymes have got WAY better, even after starting meds they're getting better.
Jeez, I can barely type! No wonder it takes 3 - 4 cups of strong coffee to get through work each day (not to mention the ritalin for the attention deficit disorder), and at a very suboptimal level... :P I think Sustiva must be a nightmare if you already have ADD and you take it (from my experience!). :D
Help! lol
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ajm, I have been on Sustiva for about 9 months. Seems like every once in a while, it makes me feel 'high as a kite' as you described. In my case, there definitely appears to be a correlation to what I eat for dinner - even if I eat around 7pm and take the Sustiva around 11 or 12midnight.
Perhaps you could vary your diet a bit and see if there is an improvement? A high carb meal like pasta (several hours before bedtime) makes me feel piss drunk about an hour after I take Sustiva, but I wake up fine in the AM. A high fat meal like a steakhouse dinner makes me feel hung over in the morning, but not as drunk at bedtime when I take the pill.
Seems like Sustiva works pretty well, but not like there are not other options if it does not agree with you. Best of luck.
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I have to agree with the post on diet. I find that what I eat for dinner makes a big difference in how I feel after taking my meds. A steak dinner causes me to experience more severe side effects. I try to keep my diet low fat and eat more vegetables and salads for dinner. Animal fat seems to effect me the most, so I stay away from red meat altogether.
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Thanks for both your responses.
When discussing diet and Sustiva, do you mean if you consistently avoid high fat meals around your Sustiva dosing, you have fewer CNS issues? I read somewhere that Sustiva is like a wave in that it takes around 14 days to build up in your system, then another 14 to dissipate. Does that mean if you have a high fat meal around your Sustiva dose, it might take a few days for the impact (higher blood drug levels) to recede?
This is only my second day taking it at 6PMish, but I'm going to try it for the rest of the week and see how it feels.
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I've been on it for nearly a month and recently I switched it to an earlier time because I've been working night shifts. The side effects had really been wearing off me, but since taking it earlier they've been hitting me hard and I don't understand why. When I was taking it at night, I found that after a week or so what I ate didn't really affect it. Now, even if I don't eat anything I find I'm feeling really fucking stoned when I take it late afternoon. I'm actually sick of it now, I end up sitting in my room at 5pm feeling stoned, paranoid and antisocial. I wish I could take it before bed again but my shift work is making this impossible. So annoying.
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Londonguy,
I just took it 30 minutes ago, so we'll see how it goes tonight. I'm still hoping things will improve. I agree that taking it just before bed reduces the noticeable side-effects, but I think it makes me sleep less well. The last two nights I think I've slept better because the "high" is pretty much gone after about 5 hours. I've been less tired the next day when I take it earlier, but I still feel mentally fuzzy at work, so far.
I'm gonna give it another week or so, and hopefully things will improve. I'm trying to keep an open mind as I don't want to program myself into having a bad experience. I'd be so happy if this combo works as it's so easy, dosing-wise.
Have you tried listening to some upbeat music or something in the afternoon? Sometimes I think a person's mindset can influence how the "high" feels. I hope things improve for you. I think you're still in the early stage of taking this drug, so I bet there's still a good chance your side effects will diminish significantly.
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Hope you feeling better babe. Before sustiva bit me on the arse, the royal free were giving me citalopram to help. Know its not a route everyone wants to take, but did help me.
x
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i wish i got the euphoria that you guys experience but for me sustiva is no joy ride and i've done every mind altering substance out there.
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Hi Antibody,
Yeah, the euphoria is fun at times, but not viable for me to experience every evening. If I take my meds just before bed, I sleep through most of it.
No matter when I take Sustiva, I end up feeling mentally tired (not physically), spaced out / confused, and unable to concentrate very well the next day. Okay, this is a slight over statement, but I work in a highly demanding professional environment where mental acuity is essential at all times. I cannot afford to be dulled down by meds.
It's such a shame as I'll miss the convenience of once daily dosing, and I've been so lucky to have a good response in every other way... Oh, well.
So I'm done with Sustiva, after six weeks, but will have to keep taking it for a bit longer until I can get an appointment with my doc to discuss switching. I'm hoping to switch out the Sustiva for Viramune. I'm concerned about the Viramune being viralogically durable given the latest studies. Guess I'll see what my doc thinks.
Best,
Andy
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ajm
I wouldn't worry too much about the recent studies. The 75% respone rate in the 1 x day group in this study is based on a really small number of people. And indeed this is true for previous studies.
Viramune was approved as a 2 x day drug and using 1 x day is pushing it a bit. It works for many people. But not all. Plus, the study used 3TC/Epivir which is no where near as long-lasting as FTC/Emtriva, which is what you;s most likely get these days (in the form of Truvada). The results may have been different if they used different nukes.
Also, the DAUFIN study says nothing meaningful about adherence. Okay, all the people on the DAUFIN study who failed treatment had adequate end of dose drug levels, but that just means they took their tabs before they went to see the professors.
In the real world, Viramune 2 x day is effective as effective a Sustiva 1 x day if you take both doses on time.
Alternatives: well there are many now, though aside from Viramune they's all PI-based, some of these are genuinely once a day too, which gives convenient dosing.
Whatever you choose, unless you's one of the 1% or so who seem to trip on all NNRTIs, you will get a clear head ... clear head is important, exactly why I avoided Sustiva.
Viramune is not for women with CD4s over 250 or men with CD4s over 400 (increases risk of serious allergic reaction a lot).
- matt
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Oops, wrong thread... :-)
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Hi Matt,
I totally know what you mean about wanting a clear head. I feel like I have cotton-wool for brains, which is frustrating.
You make really good points about the recent Viramune study... unanswered questions like adherence, why 3TC, etc... Your comments make me feel better about trying Viramune and, yeah, I'd probably stick with Truvada.
One thing struck me is that you bolded the words "if you take both doses on time". Does that mean you don't get the luxury of being 2 - 3 hours late taking your Viramune + Truvada, the way you do with Sustiva?
Other thing, does the Viramune + Truvada have decent CNS penetration? I guess I'd feel better knowing it did, as long as I get my mind back!
Cheers,
Andy
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All NNRTIs have decent penetration so Viramune, yes
On timing, well, + 2-3 hrs should be okay, Viramune has a long half-life. However, it is not as flexible as Sustiva and decent timing and not missing doses is (as ever) the key to making this drug work. Not missing doses prob more important than perfect timing.
The most forgiving PI alternative is atazanavir, truly a 1 x day drug, but this is not for everyone.
- matt
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i know what you mean by wanting your mind back. i'm mentally exhausted all the time. i don't really want the problems that come with protease inhibitors so viramune is my only other choice at this point. i've never missed a dose so adherence is a non-issue with me. i've tried everything they suggest to make the sustiva a little bit easier. ie, no food, earlier dose, at bed, in the morning instead. nothing seems to change. i've gotten past the dreams with restoril but it's both mental and physical exhaustion daily.
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Oh, God! Sustiva was the worse med I've ever taken in my 21 years positive. It lasted a month and a half with me and the doc had to switch it to Viramune (I think). The nightmares were horrible but the erotic dreams were vivid! ;D I didn't complain about those. Joking aside, I couldn't drive or stand up without a wobble. It affected my work and I felt very insecure during my daily chores. I moved it to a few different schedules and even played with the foods I ate. No luck. Even taking it before bedtime gave me headaches in the morning that lasted until noon the next day. I really admire those who can tolerate it well! Too bad I wasn't a good candidate for it....
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Antibody,
Wow, I really admire the determination that kept you taking it for all this time given the side-effects. I'm chucking in the towel with Sustiva because I've definitely reached a plateau. At first I felt wonderful on it - no CNS issues really, other than a wee bit of sleepiness. Over the last three weeks, things have gotten worse, and now leveled off at an unacceptable level.
I've posted more questions about the switch to Viramune (entitled "Sustiva and ADD") on the Johns Hopkins Q and A forum with Dr. Gallant. You might find them interesting. I just submitted another question today, so hopefully the good doctor will be kind enough to respond. Here's the link: http://qa.hopkins-aids.org/forum/recentquestions.html?section_id=61
It'll be interesting to compare notes on here once we've both made the switch! Here's hoping we both see a dramatic improvement!
Best,
Andy
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my appointment isn't until the 27th of March. jezz! 3 more weeks!!
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Just think of it this way, 32 weeks down... and just 3 more to go! (hee hee)
Take lots of naps and embrace your snooze-time, I guess. :P
I'll popping the ritalin like mad and snorting coffee grounds for another week or so.... ::)
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I always read the postings about Sustiva with such interest as I too have thought a lot about switching to Viramune, but never have. I take both Truvada and Sustiva. The first couple of months were very difficult, vivid dreams (no nightmares thank goodness) but lots of spacey, foggy mornings. Recently I have have had more spacey mornings (althugh not as nad as at the beginning), but have also found that I have been slipping in how much time I have been waiting between eating and taking Sustiva. Just two nights ago I disciplined myself and left 4 hours between eating dinner and taking my meds - the next mornings was almost like I had not taken them so I must say diet does play a key factor in my tolerance level for Sustiva.
Do make sure you give yourself 4 hours between eating (preferably low fat) and taking the Sustiva. Good luck.
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Well, my side-effects have decreased significantly over the past week. It could be one of three things:
1. It just happened to take 7 weeks for my body to adjust to Sustiva
2. Going to my acupuncturist (Monday) fixed it
3. Drinking a lot more water daily (3 liters total) to flush my system out
Have no idea which, just really glad my drowsiness has decreased and concentration is returning.
I only take it immediately before bed now to avoid feeling high. Hopefully the improvement will continue and stabilize!
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i'm going on 7 weeks with sustiva + truvada combo. i used to feel high as a kyte 2 hrs after taking it but this effect has died down. think of it this way: if you were a junkie and you keep taking the same dose every day, it does nothing anymore right? i guess i might need to take 2 tablets daily to feel the same effect in day#1. ha ha.
the only other thing i'm noticing is "itching". rubbing some corticosteroide helps.
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I am on Sustiva now for four months and on rare occasions notice any effects. Last Friday night, I had a burger intead of my usual salad for dinner. About an hour or so later, I was getting a decent beer buzz without the beer. Definitely what you eat does play into how you react to taking the pill. Going forward, it's salads for me unless I want a cheap high.. ;D
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Damn! i just checked my calender and my appointment isn't until the 28th...shit! another day to put up with this misery! >:(
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My sustiva highs come and go without warning. I do notice that high fat foods no matter what time of day I eat them sometimes will ge me high. If I eat a lot of chocolate, I will definitely get a high. Mayo will make me nauseated and high. So the food plays a role. But those moods do change with this pill. Sometimes its
euphoria and sometimes it's stay away from that bitch, cus she'll hurt ya.. I am of course exagerating a little. What I can't stand is the wretched, rancid sustiva farrrrrrrrts and dumps. Lordy!
rob
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yeah food has a factor in the side effects. i do try and have and empty stomach and never take my dose within 2 hours of eating. i hate sustiva so much. it seems to be getting worse with every dose. each day i am increasingly tired and more depressed or somnolence or whatever. i can't see taking hiv treatment the rest of my life. shit it's only been 9 months and i can't stand it. it's not the popping pills. i can do that. i had a vicodin habit longer than mother superior. i've had hangovers and i've kicked a lot of drugs and came down, crashed, cracked out. but this stuff is horrible.
it sucks because this was the only combo, (Atripla) that i agreed to take. i don't want to switch to reyataz because i don't want to take norvir. ever! i don't want it. i won't take kaletra or azt. i would try abacavir (ziagen) but you can't take that and just truvada it's got to be some pi or d drug or crap i don't want. i'm angry. i'm dedressed. i feel like crap. i am so tired of seeing the experts on the body answer people and say the side effects are rare and yada yada yada.
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Antibody,
Have you thought about substituting Viramune for Sustiva? That's my plan if the tiredness does not go away. It has improved a tiny bit lately, so I'm giving it a bit more time. Today I was tired at work though, despite 7 hours sleep - so I may not wait much longer. My doc has agreed to switch me to Viramune if I say the word.
AJM
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yes. viramune was in mind but i think my cd4 count is too high. it's 794 and they warn liver damage with cells above 400 for men. i am going to see what my doctor thinks about the viramune next week. i can't wait!
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Antibody,
I'm no expert, but the literature says there's an increased risk of liver probs if you have over 400 CD4s and you're a man, but that's not an absolute rule. You might be end up with no probs at all. You just need to have your liver enzymes checked regularly during the first six weeks on Viramune to make sure all is well. I'd also think about giving up alcohol, etc... on a temporary basis, during the first six weeks to give it the best chance of not hurting your liver. Sounds well worth trying if Sustiva is making you feel as bad as it is!
Hope it all works out and you're feeling better soon. Would like to hear how it goes if poss.
Best,
AJM
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Yea everything you said about Sustiva seems to be true with me as well. I'm going to ask to switch to Viramune.
Here's my story:
Within 2 hours I'm extremely high, and yes they say you can "sleep it off" but when the paranoia and anxiety settles in, sometimes it can be hard to fall asleep. And when I do fall asleep I usually have awful, vivid dreams in which all my worst fears come true. I wake up in the morning feeling exhausted, unmotivated, insecure, incapbable, like I want to hide in a shell and never come out. I end up getting up late every morning because I'm so tired. My eyes look like shit due to the bags that have formed under them morning after morning.
I am not really mentally incapacitated the following morning, but I feel like I have severe ADD. My mind is constantly where it should be not and I am often making tons of plans that I quickly scratch or replan. I become very indecisive and unable to accomplish anything. I find myself rushed in social situations, and often stumble or mispronounce words. When something upsets me, I feel the Sustiva kick in and it makes me 1000 x more upset than I should be, as if I can't control my emotions. I suppose the opposite would happen if I get happy, but it hasn't yet.
As the day progresses, I become more confident and exuberant, most likely because the Sustiva is dying down. Then I retake it, and try to go to sleep early and the cycle happens again.
I admire those who can take this drug. It's killing me.
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I'd also think about giving up alcohol, etc... on a temporary basis, during the first six weeks to give it the best chance of not hurting your liver.
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Best,
AJM
oh i quit drinking a few years ago. it was right around the time i was dx. i just couldn't handle the hangovers. i would start to feel sick after 1 or 2 drinks. it just wasn't worth it to me anymore.
well anyways 8:50 A.M. tomorrow morning i have an appointment with my HIV specialist and will be discussing a change from Sustiva.
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Alrighty then, at the risk of beating this to death, but for the sake of closure...
Ten days ago I dropped Sustiva for Viramune. Within a day my head began to clear up and with in a few days the incessant mental tiredness went away. I'm now back down to my regular ritalin dose (I had been doubling the dose from 10mg to 20mg every 3 hours to get through work). I feel fantastic and no side effects on Viramune WHATSOEVER. Boy, feels good to have my mind back and to not be yawning almost nonstop on the train home from work, and no longer struggling to drag myself out of bed in the mornings due to tiredness. I know I'm still in the window period to have the Viramune reaction, etc... but if there's nothing more from me on this post, assume I'm doin' swell.
My lesson: I don't have to stay on Sustiva just because my numbers are good (undetectable). Going through life feeling like a zombie is not a price I must pay to be healthy while HIV+. Twice daily dosing is a small price to pay for lucidity and high energy levels.
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Sustiva, no wonder they're selling it as a street drug.
I am only on the third day, so this is hardly a comparison with others who have been on it longer.
Day one was spent in a drunken stupor - without the booze.
Day two was better, but like living in a fog.
Day three, still a bit better, but still foggy.
Compared to this, Crixivan was a breeze.
HUGS,
Mark