Meds, Mind, Body & Benefits > Lipodystrophy & Metabolic Problems

New lipo resource

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tuggem:
hi guys,

I know that they call this buffalo hump and also refer to the Crix-belly of fat redistribution.  Do any of you have just a single badly placed location of fat on your body?  I do...don't laugh....

My legs, arms, chest and back are all very lean and you can see the muscles as if I were a model for physiology class.  However, I do have the "hump" hump.  Or that is what I call it.  It is a three or so inch thick pad of fat that extends from the beginning of my pubic hair, down to the beginning of my scrotum.  It is embarrassing in that it is slowly swallowing up my penis.  I have watched it grow for 3 years now and have considered liposuction, but am afraid it would just come back and I know how painful that would be from having had a lymph node removed in my groin once.   Also Medicare would likely not cover liposuction unless the fat were a life-threatening isssue.

My doc has never seen anything like it...and I may have had the highest levels of triglycerides in my clinic at one point: 8,250 mg/dl.  One of the phlebotomists said that they had never seen anyone with a level that high who was alive.  When they drew my blood, it apparently turned white in the tube.

I now take 6 grams of fish oil a day and watch carbs closely (also became diabetic at the same time this all started).

Can anyone relate to any of this or has anyone had similar issues?

Ron

ZCorker:
  I found your posting on Lypoatrophy interesting, but your posting appears to be mainly for a cosmetic fix  (covering things up), instead of fixing the underlying metabollic abnormality. 

  There have been metabolic studies in both the US, Australia, and France to address the issue of fixing the sunken face.  In the US, a small study by GSK using Rosiglitazone came back favorable.  And in Australia and France, a broader study demonstrating Pioglitazone (Actos) demonstrated safety and efficacy.   
There is also a broader peripheral artery study in the US for reversing and preventing peripheral artery disease with the drug Actos (Pioglitazone).  Unfortunately the study has excluded hiv patients in most cases or the study was not used prophylactically and only after extensive artery damage was discovered.

  Pioglitazone appears to have a slightly better safety and efficacy profile instead of Rosiglitazone.  For that reason I am not an advocate of Rosiglitazone.  Unfortunately Lilly Pharmaceuticals has not been an advocate of funding studies with hiv patients.  Dr. Porksen's contact info at Lilly is PORKSEN_NIELS_KARL@LILLY.COM  I would suggest that someone call the main toll free #800 at Lilly and find out who is coordinator studies.

  Keep in mind that the sunken face is thought be cause from a different hormonal insufficiency than an extended stomach.  Simply covering up your vanity and hiding your sunken face from the world doesn't fix your problem and it is this type of mentality that his making it difficult for hiv patients to get the real help that they need.

bobino:
After reading ZCorker's post, I feel impelled to respond.  Although I fully agree that it would be far better for all of us suffering from lipoatrophy/lipodystrophy if we could find something that would treat the underlying condition, it seems that such a treatment is not imminent.  Thus, people suffering from the condition are left with an often serious disfigurement and suffer from the social stigma that such a thing entails.  Many people with facial wasting become depressed and socially withdrawn.  It affects their love life, their social life, their friendships, and even their work. 

I therefore think it is unfair to characterize a person who seeks cosmetic treatment as "vain."  People like Ford, who was kind enough to document his experience for us, aren't running out to get a nose job or a tummy tuck.  They're trying to restore some semblance of their former appearance.  All they want to do is look more normal and not be subjected to stares and stigman.  To me, that's not vanity.

I fully intend to try Sculptra treatments.  And if they don't work, I'll look into PMMA.  Even if these treatments do work and restore something like my old face, I'm not going to be gorgeous or a movie star.  But if I'm lucky, I will look like me again.  That's all I want, and I don't think it has anything to do with vanity.

John

tuggem:
I would add as well that taking fish oil and watching carbs/controlling diabetes is one way to deal with the underlying condition.  It does not seem to reverse the cosmetic issues, however.

The Duke ID clinic is running a study for a nutritional supplement that has been approved in Europe for this issue, but the study is closed for diabetics, so I can not participate.  If any of you are interested, I can try to learn more about the study.

Ron

frenchpat:
Hi everyone,

in my search for more info about filler treatments for lypo I found this:

http://trt-5.org/article46.html

it exists only in french, sorry...

Pat

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