HIV Support Group
HIV (also known as human immunodeficiency virus, and formerly known as HTLV-III and lymphadenopathy-associated virus) is a retrovirus that primarily infects vital components of the human immune system which can lead the syndrome known as AIDS. Many of the problems faced by people infected with HIV result from failure of the immune system to protect from opportunistic...
If not try taking it at bedtime you will sleep through all the side effects.
diarrhea, and or headaches. What happened was way beyond that. I took the
pill at 10:30 p.m before bed. At 12:30 I woke up (sleeping was not an option) and felt like the
blankets were so heavy on my chest that they were suffocating me. I bounced
out of bed and literally stumbled to the bathroom. I had to brace
myself with both hands just to stand up. While standing there the wall in
front of me twisted and melted. I then went upstairs to avoid waking
up my wife. I paced back and forth and every few minutes I would
uncontrollably shake (my whole body...head, hands, torso, legs)as if I were
overdosed on some sort acid, mushrooms, or hallucinogenic. My heart raced. I dropped to my knees so I wouldn't fall over. Then I raised my head up and slammed it into the
floor (good thing it was well padded plush carpet). Hurt like heck.
I had panic attacks about breathing. My father-in-law tried to console
me by patting my back. I pleaded for him not to do that. It felt every time he patted me that he was pushing me into the carpet (which at the same time the carpet was swallowing
me). Objects that don't move by themselves were now alive. After about
an hour and 15 minutes, I then moved to a state of calmness. Almost
exactly like I smoked a pound of marijuana myself. I sunk into the couch
and could not move, but I was relaxed now. As that started to wear
down it became almost enjoyable. It felt exactly like being high on
cannabis. I now started laughing and told my wife and father-in-law "You
guys are missing out! You should try one of those pills."
This whole episode lasted from 12:30 to about 3:30 a.m.. At that time
I still felt a little high, but at last my mind was in control again.
I went to bed at 4:00 a.m. and had vivid dreams. I thought when they
told me about vivid dreams itn would be my own dream in high
definition...NOPE. It was like psychedelic hallucinations. The next day at 11:30
we went to Home Depot. I felt everyone was staring at me and they all
new I was high. I had tunnel vision. Didn't fell normal until about 3
in the afternoon.
I was terrified about taking my pill on Saturday. I decided this time
to be awake through the whole thing. I took the pill at 10:10 p.m.
About 1 1/2 hours in I felt weakness in my legs. At two hours I felt
pressure on my chest. I started hallucinating slightly again. My legs
buckled and I fell to the floor where I laid for about 20 minutes having
vivid images in my head. I was able to regain control again and started
explaining my episode to my father-in-law, only to stop mid sentence
and collapsed again, hot and cold chills going through my body. I made it
to the couch an had weird images in my head again. I covered with a
blanket and was able to fall asleep for an hour. By 1:30 a.m. I was
feeling woozy but in control, so I went to bed and slept pretty well.
Sunday, was almost a non event. I took my pill at 8:00 p.m. then went for a jog about 8:30 to 9:30. About 9:45 my right leg became a little wobbly (from med) at 10:10 I felt a little high (like a marijuana high) but only for a few minutes. Then the rest of the night seemed almost normal.
Monday. ..Took it...stayed up....non event.
Tuesday...Took it ...woke up panicked I couldn't breath. Bounced out of bed and had to stay awake for a couple hours, then back to sleep again.
Other side effects I have is total cotton mouth. I drink a lot of water about 1 1/2 hours into the medication. That only last about 3 hours. The other side effect I have is that my mind is NOT CLEAR. It feels doped up.
I plan on staying on Atripla for a month to see how the side effects go. I know there are only about 30 approved medications for hiv. I don't want to start and stop any because I am afraid I will build up a resistance and run out of the small arsenal of drugs, so I am going to endure this and hope it gets way better.
I hope my account of this helps the relatively few that have such weird side effects. I almost bailed taking the pill the second night.
Judge for yourself whether you are doing better or worse. You know your body best. What kind of a life is it to hallucinate (hear things, see things) and feel electricity pulsing through your body (also a known type of hallucination).
Nobody but your doctor is qualified to give you medical advice, but if I had a reaction to a drug like that, I'd flush it down the toilet. Wait, no, that'd probably harm fish. You might have to incinerate it.
Reactions vary. People handle things differently. My brother has two cats. If I look at one in a photograph, I get anaphylaxis.
Most everyone has some sort of "reaction" to the drug. It's usually gastrointestinal. I have. Mine just hasn't been to the point that it has been more than an annoyance and a life-threatening issue (i.e., diarrhea dn vomiting for 5 days in a row where you can't hold anything down). That's when you tell your doc to put you on something different.
The dreams. I don't mean to sound sick, but I actually enjoy this side-effect. My dreams are vivid and the individuals in my dreams are very interesting people. No one I've ever met, nor family members. I told my mom the other day, it's great, "I'm finally meeting new people!" Draw-back: they are so real-seeming that I have started wetting the bed (in relieveing myself in my dream, I end up doing it for real). The problem is, in the dream, it doesn't feel like a dream, but real life. THIS could be a problem if you are prone to nightmares, which I have never really been.
As with ANY medication, there are some side effects. Deciding what is managable and what isn't is up to you. I know what's on the other side (I have had PCP, Crypto, MAC). The side effects I'm experiencing on Atripla is, like I said, and annoyance. Just talk to your doctor. And do it immediately. Don't just stop taking the medication. That's when you will start developing drug-resistance. Good luck and if you want to know anything else about that, let me know. I have a lot of friends who are on Atripla or Sustiva (it's actually the Sustiva that causes alot of the side effects in Atripla).
Earl
I found this on the product insert for Atripla http://www.aidsdrugsonline.com/index.php?option=com_content&view=article&id=76&Itemid=85&lang=en
... it is my opinion that nobody should be putting ANY medicine in their body, until they understand what the medicine does, how it works, and by 'how it works' i mean, how it operates on a cellular level, (get the dictionary out, and know what YOU're doing to your body by accepting it)...what it can do for better or worse, and what the worste-case scenario can be. im not saying be paranoid and frightened, quite the contrary, i'm saying be informed, empowered, and in control, gaurding against surprises, and moreso, as a matter of giving INFORMED consent.
doctors should INSIST that patients have an extremely comprehensive grasp of EXACTLY what a medicine is capable of. this is, afterall, the INFORMATION AGE... really doc, we can handle it...
nobody told me what protease inhibitors do to the large bones, until i ended up needing a hip replacement, AT 35! go learn what protease inhibitors can do to your marrow production, and what happens to the bone tissue when marrow production is supressed by something called AVN... and you dont have to be one in a million to have that problem!
nobody told me when they filled me with zerit, years ago, that it was well known to cause neuropathy and for many patients, it can compromise their ability to do simple things, LIKE WALK, THINK, REMEMBER, BALANCE, SLEEP, DIGEST FOOD, things we usually take for granted, and things we also dont always fully understand can be SERIOUS problems, even if such side effects 'seem' to be 'tolerable'... WHAT IS TOLERABLE TODAY, IS NOT NECESSARILY TOLERABLE ON A LONG TERM BASIS, so be sure to ask the difference between 'possible side effects that may go away during treatment' and 'subtle LONG TERM side effects, that appear to be tolerable, until they bite you in the ass a few years down the line. ask about potential PERMANENT IRREVERSIBLE DAMAGE, even if it only happens to a tiny percentage... really, it will impress your doctor that you are even aware that such questions are valid and important to ask...
nobody told me that fuzion has a particularly nasty potential for serious respiratory disease, (which is rediculous with my lifelong history of respiratory problems, owing to the NON-HIV pneumonia i had as an infant, todler, pre-teen, teen, and in my 20's) they let me take this stuff without even telling me about all that? fortunately, i stopped taking all this stuff before it had a chance to swell the fluid sack that protects the lungs... so THAT's what that chest pain was all about...and i thought it was just 'side effects that go away during treatment'.... buyer beware.
nobody told me that sustiva has serious, highly disturbing psychoactive properties. my genotype test, (and nobody REALLY understands what that is, i can find a hundred people to give me two sentences about what it does, sound-bite explainations they read in a pamphlet, or some quote of a doctor's TWO-SENTENCE EXPLAINATION, but really, how many of us really know what a genotype test is, how effective is it really, and what are the potential problems with it? ARE there any problems, ARE they totally 100% accurate, DO they really mean anything substantial enough, can they really be relied upon? and by the way, what exactly do they measure, and how specifically do they do that. it's amazing we make so many decisions based on lab work we know so little about!
nobody told me what valtrex does to a person, (it's an antiviral, and can be very debilitating for some people)
nobody told me what bactrim really is, what it really does, and how terrible it can be. they constantly try to shove it down my throat, and in ten years time, ive been offered bactrim by at least five different doctors, (NONE OF WHOM CAN SEEM TO REMEMBER THAT IM DEATHLY ALLERGIC TO IT...although medicines youre allergic to are right there printed IN RED, on the front of your file, do they even CHECK before writing the scripts? do they check everytime? have you ever ASKED your doctor what his policy is about checking something like that. do you realise that 780,000 people die every year from medical mistakes just like that?
BOTTOM LINE:
if i dont know what a drug is designed to do, and specifically, scientifically, how it operates, and the complete list of negative side effects, and potential negative side effects, then it's not going into my body. if a doctor doesnt have the time to explain this to me, then he doesnt have the time to manage my life and death disease managment issues. if i myself dont know what the hell is going on, then im certainly not making decisions with INFORMED CONSENT... i may be giving consent, but informed consent is not consent, if youre not completely informed.
imagine being given treatment without informed consent, and yet most of us, do so regularly, routinely, all the time.
that's more scarey to me than illness itself.
Also, do you think the people you don't know in your dreams know the people I don't know in mine?
mschif:
A pretty sure sign of toxicity is that numb lips, gums and tongue. Did the inside of your lips feel kinda cold? If those things start happening, it's good to call a doctor, poison control or go to the emergency room.
With all of these component drugs out now, you've gotta watch to be certain that one doesn't contain something that caused a reaction earlier. On the other hand, the most frightening toxic experience I had with an HIV drug was with Retrovir, yet in the smaller amount of it in Combivir is tolerable. I had the beginnings of the allergic reaction but they did subside (as others mentioned here) with time.
Low body weight can affect dosing in some HIV drugs also, but your doctor should know that. Above all, when you find one that works, stay compliant!