POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: going_gone89 on November 16, 2017, 01:52:30 am
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I was prescribed this recently and my doctor only mentioned distended stomach, diarrhea and jaundice around the whites of the eyes as likely side effects which could manifest.
I've read about a few other possible symptoms my doctor failed to mention.
Which, btw. Why do doctors do that? I could understand omitting unlikely side effects if I were taking something more innocuous but some of these sound pretty distressing.
I’m just wondering what experiences people on here have had first hand and if they went away. I lost my footing a bit during the consultation and didn’t ask all the questions I should have.
For example, does the jaundice go away after a time or will I just be stuck like that?
What happens in the long term? I was on Truvada and Stocrin for about two years only to learn well into treatment that it had the potential to affect bone density.
I haven’t been taking anything for the past few months due to some very intolerable effects from my past regimen and I’ve been so comfortable, I want to make sure I’m ready to start a new treatment and everything that comes with it before I actually commit to taking the first pill.
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I was on Kivexa years ago it treated me just fine with no side effects.
The key is 'possible syptoms'.
Those warning inserts in medications are lists of any condition that anyone has ever reported while the trials continued. Ie one person reporting a condition out of thousands of people on trials. There is no need for the reported condition to be related to the medication.
So yes, it is entirely reasonable for a doctor to mention the common side effects, and especially anything that threatens you life or health. But simply droning on about very unlikely issues would just cloud the important take home messages.
So why do you think you'll be part of the minority who gets jaundice?
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Well, the thing is, there were common side effects that he failed to mention.
And in fact he mentioned the jaundice around the eyes specifically, to be a very common symptom among the patients he treats. In a tone which suggested I prepare myself for that possibility.
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I have been taking Reyataz/Norvir for over 12 years -- while my bilirubin is high most of the time that I have my labs done, I have never had visible jaundice (in my eyes or anywhere else). So, while my case doesn't mean that you will experience the same, it does mean that not all people experience this side effect.
A drug's side effect may be called "common", but that rarely means that most people get it -- it simply means that of those that report a side effect, it is one that gets reported the most frequently. The thing to remember, most people don't have a side effect to report. So, no need to worry too much about it. Also -- don't try and judge yourself if you see yellow in your eyes, have someone else do it.
Finally -- even if you do experience some jaundice or an elevated bilirubin level -- there is nothing "bad" about this -- your liver is not being damaged.
Mike
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Ok, that's good to hear. Thanks for replying, Mike.
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ojo hello ther, well, i agree with brocker, i didn't have problems with reyataz/norvir, if you were to ger yellowish sclera, it will go away...i din't know if you were sent for a hypersensitivity test for abacavir, part of kivexa, and yes, this is a dangerous medication, if you got tested and it was ok for you to take it, you will be fine, if you were not tested for hypersensitivity, watch for a nasty rash, were you get a rash all over your body, if so, call your doctor...lamivudine, also part of kivexa,nay give you a rash, but it is not as bad at the other rash from abacavir...i'm alwegic to abacavir, i remember that i felt so sick for seconds, so sick that i thought i was going to died, i decided to go tosleep, i thought if i died, it woild be better if i was asleep, before i went to bes, i took my abacavir, i woke up with a bad rash, my doctor warned me about this kind of rash an advised me to stop it if i happened, back in the days, there was not that teat i mentioned to you previously...please keep us posted and good luck, just think you are not goung to het the rash, if you do, talk to your doctor and mentione to him the side effect of abacavir...hugs ojo
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that's good to know, i'll keep an eye out for those symptoms once i start treatment, thank you
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I had the jaundice. Sorry to report but I guess you want to know experiences. It wasn't bad and nobody said anything - except a few friends who who knew I was positive I did say I noticed it myself and they concurred "well now that you mention it".
I also had gas.
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Yeah, my doctor mentioned even if I developed it, it would not be very noticeable. Did it ever go away tho?
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It did not go away. I can't remember how long I took. About 6 months maybe.
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Hmm, I was afraid of that. Well, I'll try my luck. I start treatment next week
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Are in a country with limited choice to meds? Or, is the the combination that best fits your resistances and the strain of virus you have?
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Here is something that I found on the National Institutes of Health around increased bilirubin due to Reyataz:
Atazanavir therapy (similar to indinavir) also causes increases in unconjugated (indirect) and total serum bilirubin that can manifest as jaundice in up to 10% of patients.
Hopefully this will help you feel a bit better - most people won't experience it. If you do, it may or may not go away after a while.
As I mentioned earlier -- I have had no issues with it over these 12 years. Although, I do hate that I have to take it with food, as it requires me to split my HIV meds to morning for Reyataz/Norvir and Evening for Sustiva/Descovy, because one should take Sustiva on an empty stomach.
Please be sure to have someone else confirm any jaundice if you THINK you see some -- it's easy to see something if you look hard enough and are worried about it, so having some "other eyes" validate it will ensure that you aren't seeing something that isn't there.
Good luck next week -- hopefully all goes well.
Mike
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Well, this is my second day taking medication and I'm pretty surprised.
Yesterday I had a bit of nausea and slight dizziness though it went away after an hour or so. Tonight, though. Same nauseous feeling except this time I had some slight trembling in my hands followed by a pretty big hot flash and significant trembling, enough to kind of freak me out for a minute.
Actually writing this after getting out of bed and trying some almond milk, hoping it's stomach related and will help calm things down, idk.
Ironically this is exactly why I stopped taking truvada and stocrin, bad hot flashes and not being able to sleep because of it.
Is this normal, will it subside? I'm considering trying to see my doctor tomorrow as this is not really something he mentioned could happen and I'm certainly not looking forward to another night of staying up researching side effects.
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researching side effects.
I think that might play a part of the problems. Look your 2 days on the meds if you're concerned speak to the doctor but try not to start reading rubbish. It will make you sick for sure.
I do hope things settle in/down for you with time and that this works for you better than the truvada based combination did
Jim
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Yeah, I just realized if I don't see him tomorrow I'll have to wait through the weekend if it keeps happening. And since he didn't say if this could happen idk if it's normal or not.
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ojo hi thee...i agree with jim, stop reading bout side effets, there are a lot of people who start feeling the side effects after reading the side effects of the meds wven having taking the meds,...just take your meds for what there are, life saving meds, take them as if were vitamines...i don't recall having any of those symptoms ehen i tokk the same combo, although, several days later, after starting abacavir, i got a awful rash, hypersensitivity, so i had to stop the abacavir, reyataz'norvir, i got yellowish eyes, it went away, lamivudine, no problems at all...these meds are strong medications, and new for your body, so, it has to react, give it time, if you keep feeling sick,and you can't talk to your doctor, talk to the pharmacist...best of luck...not a doctor, just sharing my experience, my 23 years of taking meds, i have taking lots of meds all these years...hugs ojo
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Was unable to see my doctor yesterday, luckily haven't experience any discomfort though, so I may put that off.
Noticed some sallowness yesterday as well but thought I was just being paranoid.
It is painfully obvious today though, both the whites of my eyes and my face have a noticeable tinge. I'm very fair so I guess it makes sense, but I was not expecting it so early into treatment. I think I'm willing to put up with it in the short term but can't imagine committing if it persists more than a few weeks.
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I can't actually see you, so I could be completely wrong here -- but I think you are seeing exactly what you think you will see. This is why I recommended that you NOT try and ascertain yourself if there is any yellowing of your sclera. It is extraordinarily difficult to pick up any "slight" yellowing in your own eyes.
You are so worried about side effects you may well be experiencing things just because of that.
Perhaps you are in the 10% of people who get noticeable jaundice, but if you are, it's probably not due to being very fair. You either have yellowing of your sclera (everyone's sclera is white), or you don't. At any rate -- it doesn't matter, from a health perspective, so my suggestion is to try and stop worrying about these things and live your life. You are 2-3 days into these new meds. Give your body time to adjust and just go about your business. Really -- living with HIV, if on effective treatment, can really amount to no more than slight background noise, if you let it be so.
So -- step away from Google and from the mirror and go do something fun with friends!!!
Mike
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I made a single comment about staying up researching side effects during instances where the discomfort I'm experiencing prevents me from sleeping. Meaning, I have nothing better to do, may as well inform myself, which sounds reasonably healthy and innocuous to me.
I'm only responding to this bc it's the third reply with a slightly condescending tone.
I'm yellow, ok? I'm effing yellow. End of.
I appreciate the overall message, from everyone. But, it was one comment I made and it was taken somewhere else.
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Hi
I think a lot of the guys have chipped in with experience on this thread regarding this combination and regarding starting a new treatment, sure a few have also commented and reacted to let the reading and googling go. Its not going to change anything between now and the time you see your doctor, it will however feed into whatever fears you have. I'm not seeing anything condescending in the messages other than reasonable concern for you and advice.
It was not a single comment either, your 2-3 days on a new medication and the thread opens complaining that your doc did not mention all the side effects possible and asking why is it doctor did not mention them. You than go on to mention staying up and reading up on them, I'm concerned and read the whole not just your last comment.
Have you ever read the full pamphlets on OTC medication? They are longer than my arm and sound even worse than HIV meds. Nobody ever walks me through every possible side-effect when taking an aspirin it would be crazy.
Now nobody here is denying that you may be experiencing some side effects although within 2 days would be extreme, and very rare and normally would indicate other issues. Anyhow whatever the case might be, you need to talk to your doctor about it if you are concerned.
When you start a thread people will reply to you, if you don't like it your choices are ignore it or report it.
Anyhow overall I wish you well and hope you feel better soon, ill be stepping out from this thread.
Jim
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I don't know how much I'd like to dedicate to this reply as the last person mentioned they're leaving the thread. Just to clarify to anyone else reading, I don't expect any doctor to give me a thirty minute recitation of every reported adverse effect.
There were both critical and long term effects that weren't mentioned to me. That's all.
I felt information during my consultation was sparse and my intention was to bolster it via the experiences of others. I want as much information as is reasonable to receive during a consultation. I like being informed and knowing how things work. It makes the experience, for me, much less ominous. By not knowing what's likely to occur, I can't decide what I'm willing to expose myself to and I felt as though that decision was made for me.
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There were both critical and long term effects that weren't mentioned to me. That's all.
I felt information during my consultation was sparse and my intention was to bolster it via the experiences of others.
I am sorry if you felt my comments were condescending, not my intent. In fact, my intent in this thread was to share my experience with this med. I THOUGHT I was yellow -- no one else did. I was CONVINCED I was yellow -- no one else saw it. This is why I have said what I said.
I have been taking this med for 12 years, no one (except me) has ever thought I looked yellow -- in my eyes or my skin. Does that mean you are NOT yellow right -- NO. You may well be. All I am saying is that we are NOT the best judge of this.
Just for comparison -- back in 2001, when I was negative, I contracted Hep A. I didn't know it at the time, but while I was vacationing in St. Croix, a fellow guest pointed out that I looked jaundiced (turned out that she was a pediatrician). I never noticed it.
So you see -- there is some andecdotal evidence, from my experience, that indicates we are NOT the best judges of these things. I saw it when no one did and I didn't see it when it was obvious to others.
Finally -- my advice to stop worrying about side effects and live your life is also, "my experience". It does you very little good to worry about side effects -- this whole thread seems to be about your obsession with them. At the end of the day, if you come across any, you see your doctor and make a decision to stay or switch. Remember that without these drugs, you will face the ultimate side effect of the virus.
Again - I am only trying to help, if you take it otherwise, my apologies. Tell me you aren't interested in my experience/advice and I'll leave you alone.
Mike
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Are in a country with limited choice to meds? Or, is the the combination that best fits your resistances and the strain of virus you have?
Hi ,
Did you respond to Mecch's question or did I just miss it.
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ojo hello going_gone89...i agree with Jim, if you don't like any of our replies, you can always ignore them...i think noone in here wants to make you feel bad, remember, we have all kind of people, different countries and cultures, i included, so, consider this situacion when you read us...ok, i hope you don't have any side effects with your combo, as i ,entioned before, be aware of a bad rash POSSIBLE, with abacavir, and the yellowish of the sclera in your eyes, these were the symptoms i got. ..wishing you the best, please keep us poste...big bear hug on your way ojo