Lipodystrophy…

jae001's picture

I have Hyperadiposity, one of the 2 sub-definitions of this complication of HIV  (lipodystrophy), excess fat in my belly and back. Did it come from the Crixivan I took many years ago or is it a symptom of HIV itself? Not even my doctor can answer this.

So how does this affect me?  I have very large upper arms, no fat at the elbow. I have a lovely buffalo hump and just recently I started having pain at the base of it. My belly fat is hard and even when I lose weight these just don’t go away. My face is thin, so I have injections of Sculptra a few times a year.

Has anyone ever had or know anyone who has had effective treatment for these? I have had liposuction, in my arms and belly… It just comes back. I saw a specialist about my hump and he was all about trying to get rid of this… I wasn’t impressed that he didn’t have 'before and after' pictures of successful buffalo hump removals. Let’s just say, I am waiting for the photos before I go under his knife.

Jae

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ellejay's picture

Hi Jae

for what it's worth I understand that it's the drugs which cause these changes, particularly the protease inhibitors (e.g. Crixivan) which generally interfere with metabolism - processing of cholesterol etc. My consultant acknowledges lipidostrophy is a result of taking the drugs but says that they still don't understand how or why it happens; she just advised me to exercise and diet! And how? A vegetarian who's never been overweight and who works as a full time gardener.

It's hard to get real information from doctors who appear to fudge the boundaries between what the drug effects are, and what the effects of the virus are. For instance it's well documented that 'nukes' damage the mitochondria of cells which can give rise to peripheral neuropathy (P.N. _ nerve pain and damage in extremities) but I have met some doctors who overtly deny this scientific evidence and claim PN results solely from the virus, maybe it can? Tricky.

Good luck with your problem; lets pray for a cure not a life time of toxicity.

Ellejay

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dlsl59's picture

Wow when I read this I though I wrote it. I've got the same situation. I had my 1# size of grapefruit buffalo hump surgically removed. This was done by a general surgeon. I have 4 inch scar but no longer the hump or pain. I am forming one just below that site and at my sacrum. I am glad I had the surgery but that was about 7 yrs ago. Since then there is a new drug for lipo in HIV. Egrifta is the name it is given by sub q injection once a day in stomach. It is very expensive and hard to get covered by insurance. I have been on it in trial and once approved. I did see slow improvement. I have had to stop it for other reasons but really want to get back on it. I would love to talk more maybe by email or phone. If so message me.

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Doreen's picture

Hi Jae
Thanks for posting.

I have been living w HIV for 26+ years; was on azt, ddi and Crix back in the early days; currently on reyataz norvir and epzicom (d/c'd truvada for renal issues).

I suffer from the opposite or fat loss, which no one can say for sure if it is related to the old drugs, HIV itself, or the current regimen. Legs very thin and butt practically non existent; had a few sessions of sculptra, but, I remain frustrated.

Of course I am truly grateful to be healthy and a long term survivor, but, really!!!!?? Anyway I wish you a good outcome with your "lovely hump" removal.

Stay healthy!
Warm regards

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