HIV Support Group

pardon me while i scream at the top of my lungs

this set of events you experienced is NOT, NOT NOT normal side effects, they are extreme in the most extreme, by your own words.

IF THEY WERE NORMAL SIDE EFFECTS, I DONT THINK YOUD BE COMING IN HERE TELLING US ALL WHAT A BIZARRE CONFUSING TROUBLE you were/are having.

i dont understand why everyone is so fast to minimise the danger of these drugs, when there is no short list of persons with permanent serious irreversable damage.

the reason WHY there are no long term studies of theses drugs with proper double blind placebo controls, is because too many participants in these studies drop out because of terrible intolerance, side effects, and 'adverse reactions'

sounds to me, and im no doctor, that you did not have a side effect, you had a serious adverse reaction to a dangerous, not so well studied pharma product.

we could all do with a little more HISTORY of the actual studies that were done, and the reasons why the long term studies refuse to control with placebo, worse, why the persons who do these studies are so resistant to comment when opposing opinions pose their questions.


this is what mamma said: and i would very much like to know if ANYONE on ANY aids drug, has had this same experience, and if so, did you stay on the drug?

HAVE ANY OF US EXPERIENCED THE SAME AS THIS EXPERIENCE BELOW???

fell on the bedroom floor where I lost my mind completely. I don't know how long I lay on the bedroom floor before I came to and when I did come to, I was soaking wet with sweat. Head to toe soaking wet and I could not stand by myself. My body felt like it had electricity pulsing through it and my hands were shaking numb. I asked my husband to feel my hands but he could not feel the pulsing. I just don't know how that is possible, it was so intense. Today my lips feel numb and my hands are so heavy feeling and of course I have the lingering headache I have had for weeks now. The nausea is present too and makes it really hard to want to eat. I've lost a few pounds since starting this med

i mean, COME ON, !!!

Thank you everyone for you input. Taoe, you and Dr. Duke were correct in telling me I should have contacted my doctor immediately, even though I waited until today to do so.

My doctor asked me "WHY DIDN'T YOU CALL OUR OFFICE RIGHT AWAY?"

I don't have a real good answer for that other than to say I have really not been well in the head as of late and I feel so confused. Plain old buggered out and yes, I'm hard-headed. I know better now than to wait a few more days. Maybe I didn't want him to think I was a big baby...I don't know, this is all so new and scary for me.

11 doses later and I now have a rash all over my belly, legs and hands from the med Atripla and my doctor ordered me to stop it immediately. He did give me a script for 4 days worth of Truvada however, which is 2 of the 3 drugs in Atripla.

My doc told me that the Sustiva stays in the system for several days after discontinuing it and he did not want a single drug circulating in my system which may cause the HIV to be able to mutate around it. I AM not sure what the next course of action will be for me but obviously I WILL NOT be taking Atripla or Sustiva anymore, or ever again.

Thank you everyone for your input, I visited all the links and have been learning a lot but I will need review.. My mind is just not with it lately and I am going to be so happy to claim it back as my own.

I am glad Atripla is working for others. I wish I could have made it work for me. One pill a day is a routine I can commit to...but insanity, lethargy, and GOD knows what else, is something I CANNOT!

BE WELL

P.S. If someone knows a good place to donate the unused Atripla please do pass it on. I should have about 19 pills left and will not be needing them. Thanks

I have been taking Atripla since December 2007 and fortunately I did not experienced any of the side effects. My doctor was really surprised. In February I became undectetable and I still feel great. I am having more blood tests done tomorrow to see if I remain undetectable. I am sorry to hear that you are having so much trouble with this medicine.I think it is great if you can tolerate the side effects. I love the fact that I only have to take one pill a day.

Hey All, I just wanted to update this post with my latest news. I took 2 doses of Truvada and now the rash on my body has become really bad and is everywhere. It is itchy and now I have pins and needle type feelings in my hands and arms.

I seem to be getting my wits back about me so I did call the doctor right away this morning and let him know about the worsening rash. He ordered me to stop the Truvada and to go to the Emergency room if it gets worse or if I feel I need to. I will not be going to the ER right now, but if things worsen, I guess I will be blogging from there.

My Doctor also prescribed Zyrtek for me on Thursday, which I have been taking, but it did not do any good and the rash has multiplied exponentially. I uploaded a couple of pictures to my profile so you can see the rash on my arms. It is not limited to my arms though and is all over my body.

I'm just a sad case. I wonder if I will be able to take any of the HIV drugs out there and if so...what kind of a crazy routine I will have to adhere to. I'm really going to push my doctor to give me a month or so before trying anything else, I have lofty goals for the Spring and nothing gets done while I AM in bed sleeping my life away.

BE WELL.

Try taking "Atripla" at bedtime on a empty stomach it works wonders for me.

I have had the same problems since I stopped taking the "Atripla" in the day time.

Are you taking the "Atripla" at bedtime?
If not try taking it at bedtime you will sleep through all the side effects.

I took my first pill friday night. I was anticipating nausea,
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.

My hallucinations were so bad I could not get beyond the two week mark. I also quickly developed a rash (allergic to Sustiva). Ughhh. I couldn't wait to get off of it. I'd rather not spend my nights talking with God just yet. LOL

I have been on Atripla since I first heard of it, a few years ago and it was really bad the first month or two but I do take right before bed and try not to eat with the med unless the dr tells you to. I was told it makes it worse with the fat in food so I dont eat a few hours before bed and I dont feel any different any more and no vivid dreams or dizzyness any more. Hope this helps and hang in there.