POZ Community Forums
Main Forums => Living With HIV => Topic started by: uk lady on July 04, 2008, 12:23:36 pm
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hey all hope its ok to post this here. i have been on meds for 3 years now the last for months i have changed to kaletra & truvada & before that was sustiva & truvada, i have changed due to me & my partner wanting a baby. my question is for the last few months i have noticed i am losing weight & muscle in my arms particualry, legs & bum this is making life very hard for me as before i went on meds in the first place i lost a lot of weight & gained it all after a few months on meds, so i now feel like im going back to square 1. does anyone know if this is meds or hiv itself & if so is there anything i can do maybe diet exercise or ask the doc for something? my last lab results a month ago was cd4 500 & vl iundetectable which is what it was before going on the new meds. so i am so happy that im doing great on these new meds im just really down about the weight issue if anyone has any info it would be so appreciated thanks :)
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Hello uk lady, the symptoms that you are experiencing reminds me of what i went through when i was diagnosed with lipoatrophy.Lipoatrophy is one of the side effects that can occur with the meds.The loss of lean muscle mass was detrimental to my health despite being on meds.It is often possible to resolve the lipoatrophy by having your hiv doc switch your meds.Definitely bring this issue up with your doc so that he can determine what is really going on.Your numbers look wonderful uk lady keep up the good work.
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Hey Lady,
Yep, those are the classic symptoms of lipoatrophy. It could be caused by the meds. In some cases, it has been caused by the HIV itself.
I would definitely schedule an appointment with the doctor to let him/her know what is going on.
One caveat I would add to Lorenzo's post, sometimes changing meds could halt the progression of lipoatrophy, but it may not reverse the fat and muscle loss that has already occurred.
One thing I find helpful is to exercise regularly. This helps build muscle and lessen the visual effects of lipoatrophy.
Let us know how it goes.
HUGS,
Mark
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Thanks guys thats helpful i will make an appointment with my doc, i know you mention changing meds but i have done that & only swapped the sustiva for kaletra 4 months ago so i have swapped meds. Does anyone know if the meds i am on are linked to fat loss? maybe the truvada as i have not been on kaletra very long? :)
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UK lady,
I don't think it's the Truvada. Usually drugs that are protease inhibitors are the culprit, which Kaletra is, though I believe it's not so much of a bothersome one as some of the other PI's. But, don't take anything for "word" here. This needs to be discussed with your doctor.
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Oooh, Betty, I think that's a tad off base.
First things first, we really don't know which antivirals DON'T cause lipoatrophy -- any of them might. What we do know is which ones definitely CAN cause it. Most of these are the nukes (NRTIs), especially the "d" drugs: d4T (Zerit) being the worst, followed by ddI (Videx). AZT (Retrovir) is probably 3rd in line.
The two nukes taken by Lady -- Viread and Emtriva (combined into Truvada) -- are probably the least damaging nukes, but they can still cause lipoatrophy (as can almost ANY anti-HIV drug).
While the protease inhibitors can also cause lipoatrophy, they have a better reputation than the nukes, and are often more associated with fat accumulation in the gut and upper back. And we recently learned the Kaletra causes less lipoatrophy than Sustiva. See this report:
http://www.aidsmeds.com/articles/1667_11394.shtml
The Sustiva news was a surprise, and researchers still have no theories to explain how this NNRTI is causing lipoatrophy.
Bottom line, I'm not sure Lady should change her current meds, since we'd be just guessing at this point about other anti-HIV meds that might work better for her regarding lipoatrophy.
All that said, if I were taking the same drugs as her, and was absolutely sure that I had worsening lipoatrophy on my current regimen (ask a doctor that has seen you in the past to visually confirm this fat loss, and are you sure it's getting worse since switching from Sustiva to Kaletra?), then I might take the radical step of trying a nuke-sparing combo, like Sustiva + Kaletra (in the study I linked to above, they looked at this combo, and it did the best of all in regards to lipoatrophy), or Reyataz+Norvir+Isentress (since Reyataz and Isentress have little effect on blood lipids, so theoretically might be more benign in regards to lipodystrophy). But these are just guesses, with little hard science to back them up.
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My apologies. I shouldn't have talked out of turn.
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I agree with Peter that Reyataz+Norvir+Isentress might be a good alternative -- but the fact remains that nothing will REVERSE the already evident lipo issues. It may slow it down, but that's not even guaranteed as the cellular damage can often have a delayed effect. Some doctors think that the damage can be reversed, but only perhaps by a grade (lipo is graded in severity on a scale of 1 to 4 I believe) and any reversal, if even possible (which I question greatly) is a very long term process. My HIV doctor firmly believes that I went back from a 3 to a 2 once I was on Fuzeon for a year. I noticed *some* improvement but I'm not sure if it was really that much, though my friends seemed to agree with my doctor. I actually think since I've switched off Fuzeon that it's back to a 3, but like with a lot of lipo crap much of it is hard to discern on your own, as you tend to see it as much worse than it is except in extreme grade 4 cases where it's very apparent.
Also, uk lady may want to keep in mind that her initial weight loss that she spoke of when starting meds was most likely wasting, not lipo -- they often seem the same but since you regained the weight before getting lipo that's why I believe it was simple weight loss, not an actual metabolic change as one sees in actual lipo. But obviously what you're experiencing now is lipo so that's neither here nor there, except I always feel it's important that HIV patients not confuse wasting with lipo, so I always bring this up (I've personally experienced both, and simultaneously at times).
Bottom line, this lipo issue is difficult to adequately discuss on an internet message board, certainly without seeing before/after pictures, as well as knowing your age (the older we get the harder it is to see lipo for what it is -- some of it can just be age. But if you get lipo in, say, your 30's you know it's not any aging issues. If your lipo is a grade 1 or 2 then switching meds will be helpful potentially, though it's not guaranteed of course. If you're at a 3 or 4 level then I'm not sure how much good switching will do -- you'd already be at the maximum lipo level and, while we know it's stigmatizing to say the least, you learn to adjust and live with it and/or seek facial fillers as treatment, imperfect as that route is. I know a couple people here have even had fillers put in the buttocks, but as far as your veiny arms and legs go, and the soles of your feet, there's nothing you can do about that issue.
Oh, I'd also go to a dietician too, just to make sure that any wasting issues aren't mixed in with the lipo and see what they say. I was able to gain back all of my lost weight (I was down to 140 lbs at one point, and now I'm back to 175 lbs) but the lipo is still all there -- and the weight I gained back of course all went buried deep in my gut so now I look 3 months pregnant. It's not a pretty sight, that's for sure, and sometimes I wish I'd not gained the weight back mostly because I've had to buy too many new clothes, and now have a huge wardrobe I no longer fit in. I think I might start hocking it all on eBay :)