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...
I have had HIV for over 20 years and have managed to stay off the meds but the time has come now with T-cells in the 200 range. I really hope Atripla is a drug I can take. Being only once a day I feel I can adhere, but not if I AM going to keep having crazy spells and wake up feeling like I do now. So foggy and drained and nauseous. I avoided reading the pages of literature for this drug and it's possible side effects because I did not want to convince myself of anything untrue but...seriously, this stuff is really sending me for a loop.
I started taking Atripla less than 2 weeks ago. The first 2 nights on it were pretty intense with hallucinations both visual and auditory. These were not dreams because I had to keep opening my eyes to make sure I wasn't really seeing these things. It was not scary just hard to grasp and definitely impossible to sleep. They seemed to diminish after a few nights though so I thought YEEHAW, the worst is over.
Last night was the worst episode yet. About 1/2 hour after taking the Atripla I started getting the familiar spinning, lightheaded feeling so I headed to bed promptly. I did not make it and instead 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 and I really do not need to lose any more weight and my doctors agree.
I plan to discuss these things with my doctor this week but do not feel that the pharmacy will be much use to me. They had to special order my drug and when I picked it up, the pharmacist said she had never heard of it. Oh great! So I asked the pharmacist a couple of questions and she consulted the 3 pages of literature that came with my med to give me the answers. I don't have a lot of confidence in their expert opinion because of that.
Has anyone else had these symptoms from this med and if so, did they go away with time? Are these symptoms things I need to really be concerned with? I just do not know and do not want to do my body irreversible damage. It was so scary last night all I could do was to think of GOD when my mind left. When I came to GOD was telling me it was just a spell or was it me saying that? It was very scary confusing and I don't want to have to go through that too many times.
Any insight or experiences with this drug would be appreciated.
BE WELL.
I started taking Atripla less than 2 weeks ago. The first 2 nights on it were pretty intense with hallucinations both visual and auditory. These were not dreams because I had to keep opening my eyes to make sure I wasn't really seeing these things. It was not scary just hard to grasp and definitely impossible to sleep. They seemed to diminish after a few nights though so I thought YEEHAW, the worst is over.
Last night was the worst episode yet. About 1/2 hour after taking the Atripla I started getting the familiar spinning, lightheaded feeling so I headed to bed promptly. I did not make it and instead 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 and I really do not need to lose any more weight and my doctors agree.
I plan to discuss these things with my doctor this week but do not feel that the pharmacy will be much use to me. They had to special order my drug and when I picked it up, the pharmacist said she had never heard of it. Oh great! So I asked the pharmacist a couple of questions and she consulted the 3 pages of literature that came with my med to give me the answers. I don't have a lot of confidence in their expert opinion because of that.
Has anyone else had these symptoms from this med and if so, did they go away with time? Are these symptoms things I need to really be concerned with? I just do not know and do not want to do my body irreversible damage. It was so scary last night all I could do was to think of GOD when my mind left. When I came to GOD was telling me it was just a spell or was it me saying that? It was very scary confusing and I don't want to have to go through that too many times.
Any insight or experiences with this drug would be appreciated.
BE WELL.
do you usually find it difficult to distinguish between god speaking, and your own voice?
are you versed in this sort of 'side effect' in depression meds, (and lots of other psycho-tropic drugs) tropic as in, 'tripping'...?
ive read thru a bunch of websites about the side effects of atripla, and all i can come up with is the standard, corporate 'mini-list', ALL OF THEM SAY THERE ARE OTHER SIDE EFFECTS, but nowhere is the complete list available, and honey,
IVE BEEN DIGGING FOR TWO HOURS!
NUMBNESS in the lips, THE NEXT DAY?
with all the calm reserve i can muster, it seems to me that your account of your ...
I did not make it and instead fell on the bedroom floor where I lost my mind completely" .... says more about atripla than any packet insert might!
passing out, losing your mind completely, inability to distinguish real thoughts from 'external/NOT YOU thoughts' uncontrollable shaking, NO APPARENT PULSE in hands you yourself cant even "FEEL"?
i would not be waiting more than 24 hours to be in my doctors face.
this is one of those incidents, where they say, CALL YOUR DOCTOR IMMEDIATELY...
this is what they call 'serious adverse reactions sometimes occur"
god bless your sense of calm amidst it all.
ive heard of lots of episodes of people on sustiva for a longer period, begin to have hallucinations, but within a few days? that's just wild.
best to you, do your homework. dig deep.
: )
"
NO PHARMACIST SHOULD BE ALLOWED TO SELL ANY DRUG FOR WHICH HE HAS ACCESS TO A MERE THREE PAGES OF TEXT, ... TEXT HE HASNT EVEN READ?
MY GOD IF YOU WERE IN CRISIS WOULD HE ASK YOU TO HOLD YOUR BREATH WHILE HE 'CAUGHT UP' ON THE STUFF HE'S PUSHING TO SEE WHAT HE SHOULD ADVISE?
A MADD MADD MADD MADD WORLD!
http://www.aidsinfonet.org/factsheet_detail.php?fsnumber=439
But your reactions sound like they are on the very extreme side of all that. I agree with Taoe that you should not wait days to discuss this with your doctor. You should see him or her immediately, and probably have your blood preasure and other signs monitored during the hours after you take your next dose, if you take one.
They say the insomia and other side effects normally decrease over time. But if this is more like an allergic reaction or some other thing beyond side effects, you will need to switch drugs.
go to the "medication" checker and select Atripla. Follow it down to the side effect section of the page. You should not have to tolerate such severe side effects; there are many meds to choose from. If you are not seeing your doctor soon, call him and discuss what is going on....If you have a pharmacist who doesn't know what atripla is, call the local Aids Service Organization and ask a counselor what pharmacy they recommend.
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, !!!
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 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.