POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: sffrboy on July 12, 2012, 11:14:36 pm
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I am 25 y.o, and I was diagnosed with HIV almost two months ago and just started my regiment yesterday. Starting at cd4=22 and VL= 45,000. Overall, I feel and look healthy. I exercise constantly (cycling, gym, and bikram yoga). The only thing I've noticed since starting the pills has been this constant subtle noise in my right ear. Is that common?
Thanks in advance... This blog has helped me so much with the transition.
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Hi sffrboy, welcome to the forums.
I've moved your thread into the Questions About Treatment & Side Effects forum as it's the more appropriate place for it, rather than the Insurance, Benefits Programs & HIV forum where you originally posted.
I can't say that I've ever heard of such a side effect from the meds you're on, but maybe someone else has.
Have you been swimming this summer? As it's only one ear, I have to wonder if you're not just coming down with an ear infection of some sort, rather than it being caused by the meds. Usually a side effect like that would present in both ears, not just one if it were due to the meds.
You should have a doctor look at your ear.
Again, welcome to the forums.
Ann
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It's gone now, but I will still double check with my Dr. So far so good, day #3. I actually feel more energized than the previous days. I cannot wait for my first labs after starting the treatment.
Thanks for the support!
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I'm starting this combo today (first time taking meds, recently dxd)....I'm hopeful that the side effects won't be too bad....The Doc said that there might be some GI issues for a couple days but those should taper off....as soon as I go UD and stay that way, he plans to change my meds and get me off Norvir and put me on something less toxic....Luckily I don't have any resistance issues so treatment options are wide open....
It's weird...as much as I couldn't wait to get my meds I'm kind of scared to start them....just got to suck it up though and get it going..... :-[
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I'm starting this combo today (first time taking meds, recently dxd)....I'm hopeful that the side effects won't be too bad....The Doc said that there might be some GI issues for a couple days but those should taper off....as soon as I go UD and stay that way, he plans to change my meds and get me off Norvir and put me on something less toxic....Luckily I don't have any resistance issues so treatment options are wide open....
It's weird...as much as I couldn't wait to get my meds I'm kind of scared to start them....just got to suck it up though and get it going..... :-[
a couple thoughts for you:
almost everyone has some initial side effects (as in the GI issues etc). You have to remember that extreme changes are happening in your body. The amount of HIV is going down, as the meds interrupt its life cycle. Plus the amount of medication is going up in your system. It's not like on the first dose, you suddenly have the right level of meds in you consistently- that takes a few doses to get regulated. Getting adjusted to all that often results in some sort of "nasty feeling" (gas, nausea, diarrhea). You can sometimes throw it a little rash, fever or yellowing (with this combo) within the first couple of weeks; but after that it should be smooth sailing.
I would never call or think of norvir as "toxic". I've taken it for 15+ yrs, with only GI issues off-n-on as it went from liquid to gelcap to tablet. Oh, in the liquid form it was really rough on my guts but the effects are so worth it. Norvir is an "booster". You actually have to take less Reyataz and Truvada because the norvir helps your body metabolism MORE of each of those medications. Norvir also boosts the amount of other HIV drugs. Why it even boosts non-HIV meds!
best wishes as you and the meds begin to fight the HIV!!
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Very interesting...thanks for the advice and tips...my Doc thought that Norvir might add stress to my liver which is why he wants to switch me off of it eventually...but I suppose we will see...one day at a time. :)
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my Doc thought that Norvir might add stress to my liver which is why he wants to switch me off of it eventually
do you already have problems with your liver?
If not, then it just seems like "borrowing trouble" to be planning for what "might" (but might not) happen in the future. ;)
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Nope, all my levels are normal....he said other than HIV I'm very healthy. ;D
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OK, so I just took my first dose....I have a couple of questions since you have so much experience with this combo....I know that we are supposed to take these pills with food...how much food calorie wise do you think is necessary (I forgot to ask my doc about that)....
Also, our doc said that we have a four hour window..meaning that if we aim to take meds at 7pm every day, we could go as early as 5 or as late as 9....but that we should stick as close to 7pm as possible/when possible....I was curious about your feelings on that advice as well...
Thanks so much to all...this board has been a huge source of comfort for me over the last few months. :D
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I simply take mine with dinner every night - that solves both problems of time and calories. ;)
I don't really worry about the calories (although there is some amt, 400 cals or something like that) because dinner usually fits the bill. I don't worry about timing so much either. I mean these are once a day pills. Since I pretty much eat dinner within the same 4 hr period of any given day, I end up taking my pills on the average of the same time most days.
remember a few hours isn't going to make much of a difference. why? because studies have shown that 95% or greater adherence results in viral suppression. So if actually missing a few doses a month isn't going to kill me LOL then a few hours give or take isn't that big of a deal.
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Some updates: I started this combo 8 days ago. I am taking it during breakfast, which usually includes a smoothie (blackberries, natural yogurt, bananas, and strawberries) and either a veggie omelette or oatmeal with fruits. So far I don't have any major issues. In fact, I've noticed I feel more alert than usual. I work out normally (gym, cycling, and bikram yoga). There was some flatulence involved the first few days, but it has decreased a lot now.
Yet, I've noticed difficulties falling asleep specially during the last two nights. Should I worry about it? I tried melatonin yesterday, and it helped me. I'm going to see my doctor next week and plan to bringing this up to her. Sometimes I also feel my body temperature slightly warmer at night, but it is usually for short periods of time. My eyes have also started to look slightly more yellow; I don't worry much about it because I've read that it was a normal side effect.
Jimbalaya, good luck with your first week, and I hope it goes smoothly for you as well.
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Thanks so much...my partner and I are on day 3...and other than a slight headache all day yesterday (which could be not related at all) we've both felt fine no issues at all ;D All that worrying for nothing. .... we take ours at night, and my partner feels kind of 'speedy' a couple hours after taking his...like he had a red bull or something....it could be a mental thing as I hadn't read anything about that being a side effect? Has this happened to anyone else....I don't feel it (though I wish I would haha)
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OK, so on day 4 (almost 5) I started to get a little bit jaundiced.....not very but in certain lights my skin looks a little bit yellow...from what I've read this is a possible side effect of Reyatz....From what I've read it can either go away after a couple of weeks or not...if not I might have to switch meds...wondering if anyone else had this side effect?? Thanks!
p.s. Other than that, everything's been great, hardly any GI issues at all...
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OK, so on day 4 (almost 5) I started to get a little bit jaundiced.....not very but in certain lights my skin looks a little bit yellow...from what I've read this is a possible side effect of Reyatz....From what I've read it can either go away after a couple of weeks or not...if not I might have to switch meds...wondering if anyone else had this side effect?? Thanks!
p.s. Other than that, everything's been great, hardly any GI issues at all...
Didn't we go over this recently when you were talking about your partner on google overload regarding hcv symptoms?
Did you ever stop to think that it might depend upon the type of lighting you're in and its luminosity how you'd look? Incandescent lights have a different cast than fluorescent, candle, or flood lights. It would be in your best interest to stop googling and then looking for every little thing to manifest itself regarding your personal situation. It sounds like you are stuck in self-fulfilling prophecy mode.
If you insist upon reading something, you should maybe read the package insert which came with your meds because it is medical in nature and not some random result found in a search engine and then ask your doctor what the probability is of you actually developing said side-effects described within.
Four and a half days is too early to be already thinking about a switch in regimens if you ask me and I'm sure many others here will agree.
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Yikes that response seemed a little intense for no reason....I though the purpose of these forums was to pose questions such as this....
FYI, the package insert says that jaundice is a possible side effect of Reyataz, and I was at a BBQ tonight and someone else mentioned that my skin looked strange, so I don't think it's self-fulfilled...(this is someone who knows nothing about my status or meds).
I've had jaundice before so I know what it looks like, just thought i would see what others on this cocktail have been through.
I do plan to ask my dr. tomorrow but as it's Sunday night I can't really reach him so thought I would use this resource.... but thanks anyway for taking the time to respond.
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I also suffer from jaundice due to the Atazanavir+Norvir combination but it's mainly on my eyes, not my skin. My Bilirubin levels are always high.
My doctor said I could switch the Atazanavir for Fozamprenavir if I wanted to, as this one does not increase Bilirubin in blood. But other than that I don't feel any side effect. I sometimes feel a little bloated but that could be from a number of different reasons...not going to the gym regularly, age, eating habits, etc.
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I also suffer from jaundice due to the Atazanavir+Norvir combination but it's mainly on my eyes, not my skin.
I was very glad the Reyataz didn't give me any jaundice. I had it before when I had HepB. My skin wasn't discolored but my eyes were - a lot. I looked like I had the werewolf eyes Michael Jackson has at the end of "thriller" LOL. ;D We were having a mini-epidemic of HepB at the retail store where I was working for and the HR director freaked out when I stopped in her office and she noticed my eyes. ROFLMAO good times!
definitely check in with your doc. Sometimes the jaundice is a temporary effect and sometimes it's a reason to switch meds. You'll need a doc and blood work to determine that, unless of course the yellow effect is already toning down.
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Thanks for the advice! ;D. I did call the doc today and they asked me to come in...they were surprised that it happened so quickly as they said only a couple of other patients of theirs had this side effect and it was after being on Reyataz for a while...they did send me in for some bloodwork though to see what's going on.....thanks for sharing your experiences.
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I used to be on Reyetaz and had to switch because of this side effect. Now mind you, this didn't occur until after I had been on it for over a year. Prior to that, it only happened briefly and quickly subsided. What it did was "tell on me" if I went out and partied. Any booze or um....anything else, and I'd get yellow for a day or two and then return to normal.
While I don't dismiss your concern (I understand that yellow is YELLOW and can interfere with the quality of your personal / professional life), I do agree with the above that this is WAY too early to think about tossing this combo out the window. You need to give your body a little more time to stablize on it. Them's the breaks when it comes to HIV - you may have to just expect to live with the yellow or the squits or whatever else the problem is for a bit until your body chills out and gets used to it.
Even if it doesn't, it still beats dead. You can bet I'll walk around like Chiquita before I become fertilizer.
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You can bet I'll walk around like Chiquita before I become fertilizer.
ROFLMAO ;D
That reminds me of a situation I've been in that makes me not always understand those newbies with their fear of meds. Some of those early meds had me literally throwing up every day. As horrible as that was, it gave me just barely quality of life. Oh not that I didn't stop meds a couple of time for quality of life vs barfing every day; but I stuck with my meds for the most part because barfing was better than being dead.
So when I switched and moved onto this RTN combo and the puking suddenly slacked off to 4-6 times a month, I thought I was in heaven - without having died to get there. ;D After 30 days a month barfing to only 6 days a month barfing, why, that was amazing! then for some reason, when my last late partner went into the hospital - that was 3 yrs on this combo with 6 barf days a month - my numbers leveled off and the barfing totally quit!! I've only thrown up about a dozen and a half times in the last 4 yrs now. I thank RTN for feeling so normal, and not feeling so nauseous, these days.
there's a lot of misery one can tolerate when one has too - to not be dead. Puking a couple times a month or living life looking like a yellow banana isn't all that bad. LOL
Hopefully your discoloration will be a short-lived side effect, Jbalaya. When are you seeing the doc? Keep us informed about what's going on with ya. ;)
hey Rockin, so you are still jaundiced from the meds? Is this an on-going thing? How long? Is it something you have some control over, like Tim talked about moderating alcohol usage to not increase the effect?
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I went today to get the lab work done.....
I understand that yellow is not the end of the world, and will follow whatever advice my doc gives me as I trust and value his opinion immensely.....I was just wondering what experience others had....I wasn't sure if it was a temporary or permanent side effect...if its permanent I might want to switch...as a teacher I can only imagine the jokes 8 year olds could come up with. :)
We aren't resistant to any meds so we do have options...we almost went with Atripla but opted for this instead, I'm not switching right away......I'll wait for the labs, meet with my doc. And go from there. :)
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hey Rockin, so you are still jaundiced from the meds? Is this an on-going thing? How long? Is it something you have some control over, like Tim talked about moderating alcohol usage to not increase the effect?
It was worse in the beginning actually. A couple of people noticed the yellowness in my eyes and it really freaked me out because people start to believe you might have a liver problem or Hep.
But my Bilirubin level is still high, I just did a full blood test 2 months ago and it was the only thing that was off. Something like 2,2 or like that. My eyes never went back to being completely white. I have no idea if it gets worse when I drink.
My doctor said in the beginning is better to stick to the original combo if its working for you. Its been a year now and I'm considering whether I should switch to Fozamprenavir. He stated that he's not against that, but then I would be switching 1 Atazanavir pill for 2 Fozamprenavir. Which means, 6 pills instead of 5. Not a major difference at all but well...I haven't decided on it yet. Any thoughts?
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My doctor said in the beginning is better to stick to the original combo if its working for you. ...I haven't decided on it yet. Any thoughts?
at times having been stuck on some med with side effects because there was nothing else (due to my resistance profile and no new meds coming on the market), I've always been of the if-it-ain't-broke-don't-fck-with-it mindset because running out of options is no fun.
however, there are plenty of options for someone in your position. It's been a year now, what do you think about the side effect? Is the yellowing too much or something you have to explain all the time? Do you drink much? Do you have lots of stress? (you know, things that might affect your liver and raise the bilirubin level even higher) Is that level too high for your comfort right now? Answer those questions and I guess you'll know your answer - because trading 6 pills for 5 in a non-issue I would think. ;) ;D
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at times having been stuck on some med with side effects because there was nothing else (due to my resistance profile and no new meds coming on the market), I've always been of the if-it-ain't-broke-don't-fck-with-it mindset because running out of options is no fun.
however, there are plenty of options for someone in your position. It's been a year now, what do you think about the side effect? Is the yellowing too much or something you have to explain all the time? Do you drink much? Do you have lots of stress? (you know, things that might affect your liver and raise the bilirubin level even higher) Is that level too high for your comfort right now? Answer those questions and I guess you'll know your answer - because trading 6 pills for 5 in a non-issue I would think. ;) ;D
Well I do miss the white in my eyes lol. I don't know if more people notice and just don't say anything about it. Its not about disclosure or anything, sometimes I'm just afraid it might make my eyes a bit weird.
My stress levels are fine, I'm sleeping well. But I do drink, yes. Trying to cut it down but I do. Usually a bottle of vodka a week or something like that. Actually considering switching to weed, I think in our situation is better to not overstress your liver so weed might be the way to go. I get a bit too slow with it sometimes but I honestly don't feel at the moment I can't go on about my life without any "poison" at all.
At the end of the day the biggest question is how effective Fozamprenavir is compared to Atazanavir...and possible side effects.
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I'm so happy to say that after 15 days on this combo, the side effects are finally starting to wane! I haven't jaundiced in the last 5 or 6 days, and just today my eyes are back to white--mostly (they'd been a murky yellow since day 3).....just in time too, since I go back to work on Monday. ;D Other than that I have had zero side effects....I will have my bilirubin level checked again on Monday, and then in 2 weeks I go in for the full workup to see how the meds are working re: viral load, percentage, cd4, etc.