POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: uncertain on October 17, 2013, 01:54:17 pm
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I was diagnosed September 6 with ARS and was put on that combination the travuda once a day the 600 mg prezista and 100 mg norvir twice a day. I am exhausted, the first two weeks of treatment were not bad, now I have horrific stomach pain at times worse, and am always exhausted, ALWAYS, its work for me to get to bus, and i just order in as im so sick to cook, I do make it to work but that's it. My initial viral load was 11,000,000 as it was a new infection, my western blot just turned poz last week. I think I must be on the wrong combination because I dont have a fever, but im so weak I feel like Im dying. I will go for blood draw on monday and beg my dr. to change to some other combination. The whole thing has been devastating enough, lying person who infected me in my early 40s cant work now in a country because of this.... Yes I am starting therapy. My question is, have others on this therapy felt so horrible and if so.... did it pass. I think its the wrong therapy... any replys much appreciated....
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Your body is doing a massive amount of work dealing with the infection, yoiu will feel tired, just like bad flu.
A change of meds might help, the only way to find out is to have a go. Some meds just don't suit some people. But nb the gut is a major site of attack in initial HIV infection.
It does get better, promise.
- matt
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Welcome to the forum
So you got treated very very very early in the infection ?
Not a bad strategy, if that is so. With no time for a resistance test, docs go for the most likely most potent
If you are, as I understood, at the acute stage, (the very early stage), it is not called acute for nothing! I stayed almost a month in bed with about 2-3 hours awake
treatment wise you should be doing fine, so hold on to it and as previously said, be confident that this will get back to normal soon.
Good Luck Eric
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Hey there...
Just read your post,
Could your doc solve your discomforts,any changes? Feeling better ?
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Well this is an update now, I started to feel less tired, but then around the 25th it started to hurt terribly, my ass when i sat down on hard chairs, so i started to bring a pillow to work, my left shoulder and backbone are sore, and the doc said that it might be the isentress but that I had to stick it out until December 4th. The upside is that I dont feel ill anymore or have the Immune reconstruction syndrome, I did force myself to the gym last week, and that did help with the ass, (resistance) i was a one hour and a half 5 days a week and have not been in almost 3 months and i went continually since 21 so maybe my body is also falling apart from all this bed, I am very down as my support system is far away and has not really known what to say to me. I think my poz friends, don't understand why I am having so much trouble with the treatment, but I am a tough bitch, the last one to give up, so I kind of expect more from them. Plus people at work say "you look so pale and your face so thin), my cheeks are more sallow and my wrists are smaller, could be weightloss but ive only lost 7 pounds, anyway, as sick as I was I had my cheeks filled in a bit, and I look like my old self except for thinner arms, but hope to adress this once energy is back, and yes I think I am depressed... Im just so much fun aren't I!!
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hi
Thanks for the PM. I'd like to share my answer with others, because here is a place to build up a better understanding of patient's strategies , by sharing views and opinions in a respectful fashion
Being tired is part of the healing... I admit this is not for everyone, but, fatigue comes with the territory. You are currently killing 11 millions virions per micro liters of blood, you have 5 million micro liters of blood and blood accounts for 2% of lymphocytes. I let you do the math ;-)
This is an Enormous amount! And this in a matter of a few days or weeks !
What did you expect ? This is not the flue...
As for dreaded body changes, do not worry this much. If it ever happens this would in many months, if that ever happens. It is NOT as common as used to be
Concerning early treatment, There is some evidence that people who started treatment early and interrupted at month 24 (as this was the protocol) have been able to remain off meds.
They call early treatment treatment within 6 months of infection... Interruption success rate is 15%
Me, I was started at Month 10 (which is not far away from 6) with highly penetrating drugs and I can show (on my own data) that some recovery is still happening... And I am at month 40.
Therefore, would like to share this with people tempted by early interruption
if the 'academic' data says 24 Months -> 15 % success rate, then there is a possibility that 36 or even 48 would have yielded a higher rate. Except that the researcher were eager to publish quick.
So the protocol was 24 months
Therefore, I , personally, would be a bit more conservative. I would love to be able to report a successful treatment interruption, but, I am not hurry for any glory.
If longer treatment increases the chances of success (if any...) then better wait
The real good news for you, is that early treatment means you may only 'suffer' from the effects of the meds and not of the effects of chronic infection and 'older' meds and so forth. So you will most likely be free of all the nasties that you read about on the internet
bear with the meds, stay healthy, protect yourself and others and be happy!
Cheers Eric
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Thank you Eric, I went from 11,000,000 on September 12th to 1,000 on October 17th. So it seemed the viral load was knocked out in 5 weeks. The sides started around the 17th, when the immune reconstruction kicked in. Its just the wierd pains, like (spelling) arthritis like mid backbone, side bones, wrist pain, finger pain, but pain i mean discomfort like the way I imagine my Grandma. Now I was (god I hate to say was) on the eliptical 5 days a week for 40 minutes at level 15 effortlessly and 45 minutes of weights, a different part every day, went on a euro holiday Auguest 8th to August 7th was the last day at gym apart from my frail attempt to return, now the little bit of squats i did at gym (20 minutes) did help, but also wore me out. Miss P, has advised me to keep resting up. It's mostly my ass, now I always had a flat ass that I worked very hard at, just to be ok (my friends called me flatscreen) but anyway, I never had pain, it almost feels like I am just sittin on the bones, and I dont think wasting could happen cause I am 150 pounds at 6 feet and am normally 155. so only 5 different. Anyway, just hoping when I see the Doc (Im american in europe) that he will try and figure out if I have toxicity or what, I do love Truvada and Isentress, but I know Truvada can be known for bone and muscle problems, mine started after a month... maybe that's normal...I just dread sustiva and would love to try either a PI with Isentress or what i would really like to try would be endullent (spelling) and isentress). Dr. Perrone says he has seen positive results and due to my sidess, I would love to try.... But in Italy it's not always so easy cause these Italian Dr's are good, but they like "tried and true"... but if you are emotional and desperate, they take pity on you and might let you try. I understand them not wanting treatment failure, but again when your walking along like a 80 year old muscle lady and you were a 40 something with the body of a 28 year old, it is a hard pill to swollow in 2 months time. But hope things get better
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Okay...
The joint pain also comes with the territory...
There is a lot of inflamation going on in your body right now and it aches most at the joints. here, I still have these kind of attacks and there are days where I feel 80 y. old. Don't even mention the gym to me! I can hardly move some days.
Low dose , low acting aspirine should help
As for the pain in the butt... Boy! I wished I could be called flatscreen!
This is not the case and the good news is that some people like that part of the body comfortable. There is a wide diversity in bodyshape and also in people's taste and desire
Look... Bear with it, that old ladies stuff will go. been there, done that... I am not telling this is not happening and don't sympathize, but, here again, please be patient.
I'll throw 2 numbers in the discussion to help you get a sense of the time it takes.
You went UD fast. Good... So CD4s and CD8s population have to readjust.
their average half life (more or less like a life expectancy for cells) are 6 and 9 months respectively, so the waves that this big infection created will fade away...
But, keep these number in mind,as no meds can hasten the immune recovery.
Time, patience, time, patience and ... hum... with proper protection, I am sure some will love a flatscreen by their side
The clinically non-relevant, 'mild' immune reconstitution, yes, I see what you mean. Same here... But , it will go away...
Stay put
eric
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Thank you Eric, I do notice I feel my bones (collar bone, back bones). I am hoping this all subsides, when I go to the Doc in early December it will have been 3 months on this regime and perhaps they can try something new. I appreciate your reply. I find it odd that the side effects with muscle weakness and (what feels like) muscle deterioration seem to be getting worse, I don't know if it is a very small side effect of Isentress and Truvada or one or the other. I do feel that I have lost a lot of muscle in my arms, legs not so much, ass hurts. I have been advised my Miss P, lovingly to not worry about the gym until I feel better, but today I am at work (and the days I do not work and am in bed, I feel much better, after 8 hours out of house I feel more exhausted than ever, being diagnosed September 6th and now we are at November 19th, not sure if this is normal. I will ask my doctor when I go in December and see what he says, although my team has a very "deal with it" attitude. Thank you for your insight. I am a tough cookie so I know I am not imagining these sides, but am trying to deal with them as best I can.....