POZ Community Forums
Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: atlq on August 03, 2008, 08:55:43 pm
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I posted the following message at the Johns Hopkins HIV patient forum for Dr. Gallant there, but thouhgt I'd repost here and see if it might start a discussion...
Thanks again for this forum. I am currently taking Isentress/Intelence/and Truvada and seem to be doing well, but my old friend facial lipoatrophy seems to be returning, as my Sculptra treatments from 3 years ago appear to be fading. I am about to start the expensive process of being "reinflated" again, but it has brought to mind a few questions:
1) I know it is early, but is there any anectdotal or clinical word out as far as Isentress/Intelence and lipo or mitochrondria (sp?) damage?
2) Does lipo continue to advance in some patients once the offending drugs have been removed? I haven't been on d4t in a decade or AZT for 4 years an had hoped to see some facial improvement
from baseline by now.But some days I actually think it seems worse.
3) Finally, do you ever forsee a time when private insurers will come to terms with the fact that HAART facial reconstruction procedures are not cosmetic but intregal to a patients psychological well being and ability to stay drug adherent (saving them money by helping to keep patients out of the hospital)?
Sorry for so many questions at once.
Thanks!
If anyone has any thought on these (or any other related matter), I'd love to read them!
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I've had some degree of lipoatrophy in the face, arms amd legs for years.
I can live with the lipoatrophy. It sometimes seems to be more noticeable (bad lighting) than at other times.
My main concern is lipohypertrophy. That was the reason I switched form Crixivan after 11 years. The "Crix belly" is certainly there and the hump on my back has forced me to buy continually larger shirts.
But I doubt I will ever have either addressed comestically. I can't afford it and, as you noted in your third question, most insurers won't pay for it.
From what I have seen, neither lipoatrophy nor lipohypertrphy reverse themselves, or, at least if they do, they take their own sweet time doing it.
I'd be interested in hearing what Dr. Gallant has to say about this. He's been around this bug for a long time.
HUGS,
Mark
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Mark,
Thanks for sharing. I actually got this response from Dr. Gallant this morning:
On Aug 3, 2008 Joel E. Gallant, M.D., M.P.H. replied:
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1) As far as we know, there should be no lipoatrophy on this combination. More likely, the Sculptra affects are just wearing off. (But 3 years is a pretty good run!)
2) There should be no further progression of lipoatrophy after you've stopped the offending medications. However, there is some evidence--at least with AZT--that the effects may not be reversible if the lipoatrophy had been progressive on the drug for a long time.
3) I'm not optimistic about insurance coverage for lipoatrophy treatment. Insurance companies are generally in the business of looking for things NOT to cover--I can't imagine that they'll voluntarily step up and agree to cover Sculptra and other face fillers. Sorry!
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Dr. Gallant pretty much said what I would have replied.
I've had lipoatrophy for a decade -- it began on the soles of my feet and my legs/arms (veiny "cabling" is what doctors call it), and my buttocks -- and then by the 2nd or 3rd year it became apparent in my face. I no longer wear shorts, which sucks in hot weather, nor do I go to the beach -- and I used to love going to the beach. But hey, that means no skin cancer :)
As far as my face, my doctor swears that I had some slight reversal over the past year once I went on Fuzeon. I'm not sure I agree with him, but my friends seem to. But I also had concurrent wasting issues, which of course is a different process than actual lipo, so I think some of what they see as lipo reversal is simply the fact that my wasting issues have been resolved. The underlying mitochondrial cellular damage is still there, and is not reversible as far as I know.
I have a local contact that a friend recommended that will give me Sculptra injections for free, but I've been neglectful and not proceeded with doing this. I think I will this fall though, but the thought of several treatments with multiple injections isn't particularly appealing. Back when I was still employed, and pre-Sculptra, I actually had collagen injected in my face back in 2001 by a chi-chi Park Avenue plastic surgeon, and this was rather expensive and did not last very long at all.
I totally think that insurance should cover the cost of this, as it's akin to breast replacements after a mastectomy. This was also once considered cosmetic until, I believe, many women convinced congressional representatives to apply pressure on the insurance lobby. I guess HIVers don't have as much clout in this respect. Either that or the pharmaceutical industry needs to chip in, as it's their drugs that have done this.
It's completely psychologically damaging of course, but in the past 5 years I've kind of gotten over it, plus I've certainly seen other LTS that have lipo much worse than I do. Oh, and shaving is a nightmare for me. In fact, I've not actually completely shaved my face in about 6 years. I just use an electric clipper as I have to pull back the loose skin on my face to get the job done. However, I am pondering completely shaving before my trip to Mexico City, so we shall see.
I also enjoy having all of the HIV n00bs in my doctor's office waiting room stare at me in object horror, traumatized at the thought of getting lipo like I have. Suffer the children, I say!
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Yeah, nothing much new...I ask variations on these questions to lots of docs and I guess there is still too much we don't completely know..I can totally relate to what you said about friends or loved ones having different perceptions of how you look, compared to your own perception. . But I have started to notice co workers and others slightly concerned looks (are you too stressed out?...etc...) so I am going to use the Patient Assistance Program again....Some people have had great experiences with Sculptra and some not so fantastic, but don't let the thought of facial injections hold you back if you can try it. The face is numbed and the needles feel like mosquito bites (at least to me)....As far as my legs go, I too am beginning to wear shorts less and less, but I guess I can deal with that.
I'd just like to see some clinical stat soon about the 2nd and 3rd generation of ARV's and their metabolic effects. We are told that the worst of medicine induced lipo is behind us, I'd just like to see some more evidence...
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I don't know what "generation" of meds Mini is on, but I'm here to tell you that lipo-inducing meds still exist. She has lipoatrophy in her face, arms, legs, and feet. She also has some lipodystrophy in her poochy belly - the only place she actually has any noticable body fat. I have pictures of her at a year old when she's nice and round. By 18mths old, it starts to become noticable. Every subsequent year, it becomes more and more pronounced. Now, she's just thin skin and bones with nice veins protruding above her skin. Her cheecks are sunken, but the skin is loose so that when she smiles, it looks like she has layers of "laugh line" wrinkles. So, whatever meds they are talking about, aren't, or weren't, available when she started meds nearly 8yrs ago.
Mum
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That sounds like an exact description of me. I'll let mini yank on the loose folds of skin on my face when I see her next week :)
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MM,
By "first generation", I meant fat hating nukes like Zerit, AZT, and possibly DDI....but yeah, you are right, until more studies come in, we should probably assume that some of the other other drugs can kill fat cells too..
Is Mini still on Zerit? (I thought I remembered reading that in one of your posts-if I am wrong, I apologize). if so, that is definitely one of the meds that causes this problem.
Is it possible to switch the Zerit out for a more fat friendly nuke (Viread)? Or to even drop it (depending on the other meds in her combo...)?
I
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atl,
Sorry if this is a hijack, but I want to answer your questions. Yes, Mini is still on Zerit and Kaletra, even though her genotyping done in 2002 showed a resistence to Zerit (no idea why and can't get her PID to change it). At some point in her treatment, she was also on AZT (at birth) and DDI (mixed with Malox). Up until this past January, she was also on Susteva. Her PID will not put her on Viread until the peds study comes out which is rumored to be any day now (right, newt?) She's been on a host of other meds / combos, too.
Philly, we call Mini "rubber cheeks" because instead of pinching them, you can literally pull the skin out. She looks like the "rubber man" picture in our Ripley's Believe It or Not book.
Mum
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Mum,
My thread, so don't worry about the highjack. Mini's situation sounds more important anyway. I try to make a point of not second guessing the decisions of someones conscientious physician, but I have to wonder, why in the world would he/she would keep Mini on this drug, particularly if she is resistant to it. Not only does it mean the lipo is continuing, but in effect Mini is taking Kaletra monotherapy. I read a lot of your posts Mum, so I know how hard you fight for Mini everyday, but I think this may be another fight you need to start. If your physician is waiting for the Viread study results, fine I guess, but since the Zerit is not doing anything in terms of viral suppression and is known to be toxic, I would yell until it is replaced or removed (with maybe this?)
http://www.hivandhepatitis.com/recent/2008/021208_b.html
.....Just my two cents...
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Hey Mum,
Yes, D4T (Zerit), DDI and DDC were major culprits with lipoatrophy. AZT is indicated there too and there was some discussion about Epivir contributing to it, but I don't know if that is true or not.
The problem is, as I'm sure you know, not all meds are approved for children. That may be why Mini's doc is reticent to change her regimen. But even AZT would be better than Zerit, at least in my humble opinion.
Sorry, I didn't mean to hijack the thread.
My skin isn't quite as rubbery, but you can count the veins in my arms, legs, face, head, chest, etc.
But, when I see you next week, you can rub my crix belly for good luck!
HUGS,
Mark
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Stretching cheeks...rubbing bellies...I wonder what other body parts I'll get to touch ;D.
Mum
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2) Does lipo continue to advance in some patients once the offending drugs have been removed? I haven't been on d4t in a decade or AZT for 4 years an had hoped to see some facial improvement
from baseline by now.But some days I actually think it seems worse.
Thanks![/i]
RE: 2) After quitting D4T (5 years treatment) and during a period of no treatment (7 years STI) I was surprised to see some improvement years later. It was better than 50%; it's nice to have a little fat on the bottom again. I had silikon 1000 injected in the face cheeks so there's no way of knowing, but cheeks are cheeks.
3) Yeah, when we have universal single-payer healthcare in the USA, not "affordable healthcare for those who want it", the Dem's slogan of the moment (I am a Democrat. Consider the alternative. lol).
That's a fine, organized post. No apology required.
8) -megasept
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Mega,
;D..Thanks for the info...I'm going back for my second "fillup" of Sculptra this week...maybe by the time it wears off, I'll see some permanent improvement....