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Author Topic: lipodystrophy  (Read 8188 times)

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Offline johnnyquest

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« on: February 15, 2007, 11:15:04 AM »
hi folks-  i'm new to the site , but not to poz--since '94. i was 36 at the time and i may have been poz for a few years or months. according to "doctors" no-one really knows.  i started with meds AZTonly for 2 years--i felt pretty good. at that time i had no health insurance and went to a clinic at Beth Isreal Hosp in Newark NJ. All things considered, in retrospect, I was treatedw/ dignity by the staff and docs  I also did not have a choice.
Then, in '96 , Protease and a new class of drugs were introduced.  the doctors immediately changed my regimen to crixivan(2 piis 3times a day on an empty stomach ***8 8oz glasses of water a dat to prevent kidney stones!), zerit, and epivir. 
I had just started a new job in the happy world of catering. At this point I initially lost 20 # over a 2-year period because of chronic diahrrea, but my t-cells moved up for the first time.   on a regular trip to the clinic, my doctor pointed out that  i was developing a small hump of fat on my upper back,due to the aids meds. Nothing was done because my numbers were good. By the end of '99, I looked like a float tin the Macy's parade. my chin and face tripled in size, and the hump was like quasimoto. i'm joking now, but i'm still psychologically not over it.
 My mother, who i did not disclose to, and other family members and co-workers were like o my god-- i tried to explain it away as a hormone imbalance---and in fact the clinic (after i had signed many waivers-- my advice --DON'T sign waivers for new meds!) did some hormoanl digging to see if it related to cortisol.  All this brings me to my point, beleve it or not.  in 2000, after researching for endless hours, praying, i found a doc to do lipo on my neck, lower jaw, back of my skull and wou9ld also surgically remove the hump.  this was done at ST. Vincent"s in Manhattan.  Ihad also by this time gotten a job w/ health insurance, so that was KEY to the operation.  When i came out of sugery, i was bandaged from head to upper chest and back.  after a week at home i could finally sit up in a chair for 1/2 hour. the doctor told me he had lipo-ed the back, not operated. 
  after @ 6 mos, i noticed , after the initial swelling went down , that fat deposits were settling in the affected areas.
Today, and every day, I lok in the mirror and almost cry over my lost looks.  By the way, carrying those extra 30 # has  affected my posture and joints,not in agood way.  Question-- Am I happy to be alive?. Yes--it's philosophical, apparently, not physical!

Offline GSOgymrat

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  • HIV+ since 1993. Relentlessly gay.
Re: lipodystrophy
« Reply #1 on: February 16, 2007, 10:31:43 PM »
Thanks for sharing your story. Lipo really does a number on your self image.

Offline jack

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  • fomerly the loser known as Jake
Re: lipodystrophy
« Reply #2 on: February 20, 2007, 06:12:39 PM »
johny,your story sounds identical to mine. I dont have to worry about infecting anyone,no one in their right mind would have sex with me. I too felt like Lon Chaney in Hunchback of ND. The back of the skull lumps of lard are really kool, sorta gives you a Darth vader look from the back.

Offline mjmel

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Re: lipodystrophy
« Reply #3 on: February 21, 2007, 08:37:09 PM »
Welcome to the forum. Your story is one of a harsher aspect of being HIV+......and I am so sorry you have experienced so much pain and discomforts. Your story is read here and it matters--as we all want to learn from one another and sharing our stories is part of that. I believe you can find some conversation and even laughter on this forum. There's a fair share of weirdness too. Hope you will visit often and long enough to become acquainted with some the the folks here. I am a relatively new member to this forum and have been enjoying it--for the most part. Looking forward to reading your comments, ventings, jokes and what-nots. ;)
« Last Edit: February 21, 2007, 08:45:16 PM by mjmel »

Offline mrhp

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Re: lipodystrophy
« Reply #4 on: April 22, 2007, 01:51:36 PM »
Finally the correct thread.

I am really being bothered by the hump on my neck and the belly I have to deal with.  Fortunately because I have returned to work and own my own company I can make arguments for the medical necessity for these things to be corrected.  I have been waiting for a consult for liposuction but not sure if I want to go that way.

I know that friends of mine in toronto are using Testosterone but it must be in the injection form to eliminate the stomach problems and it is working for them.

In my work I am on Chimney's cleaning them to not being able to tilt my head all the way up is making it unsafe for me and not being able to grab hold of the chimney well or other items because my stomach is getting so large is putting my life in jeopardy on the roof not to mention working around heights with extra weight is not good anyway.

So has anyone heard of any studies on testosterone on the stomach and what can be used on the buffalo hump.  I guess I should be honored having a buffalo hump being aboriginal but not the case LOL. 

Even some testimonials if people have used testosterone would be helpful.  I have my doctors on the ropes and just about to perscribe it but need some evidence even anecdotal will do at this point since we have been working on the problem for 3 years and thy are at a loss at what to do other than liposuction.

I know the jell does not work because I tried it and the pills gave me cancerous tumors in my lymph nodes in my groin so I do not want to go there again.  But a whole group of men I now in Toronto who are totally into their physical fitness around playing in the bath houses are using the testosterone to control the stomach so I was hoping one or two may have heard about it or even better seen a study or anything out there in cyber space that may help me convince my doctors to give me the injections even though my testosterone is not low enough to justify it.

Thanks for listening to my first posting  Mike

Offline gordonh28

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Re: lipodystrophy
« Reply #5 on: May 05, 2007, 11:13:49 AM »
I have had the hump and the belly from lipo for many years. I was diagnosed in 95, and the medications that I was taking had no history of causing the displaced fatty tissue. I went on a drug holiday for 9 months and it went away. When i started meds again, it was all back within a year. At the time I had very high tcells and a minimum viral load.
After a few years i took a 3 year drug holiday because on top of the lipo I was also getting severe joint pain, and yet my numbers were were good, and I was still not on a protease inhibitor at the time. Well, after a hip replacement, on no meds, my viral load went way up, but my tcells stayed well above 500. So back on meds I went, the current regiment that is on my profile. I had one more hip replacement, and my numbers continues to climb, and the 1st time since diagnoses I had no viral load. But still a hump on the back, it is a horrible side affect, and made my self image unbearable for me. In January of this year I got a grant to join the local YMCA, and now I am finally noticing the hump has decreased as well as my belly. I do a full hour of cardio 3-4 days a week. I have lost almost 30 pounds, and my self image has completely changed. Both of My Doctors have also seen the reduction.
it is working for me, but I have heard other people try exercise and not see a difference. I do not do any weight training though, it seems to add muscle on top of the fat deposits and I don't want that to happen.
Good luck with your problem and I hope my experience has helped.
Gordonh28 ( Al )

I have been in St Pete, Fl. for 9 years.
Moved here from Miami, I lived there for 12 years. (Diagnosed in 1995)

02/28/2008 VL>25    CD4>837 CD4%>37
05/08/2008 VL>25    CD4>875 CD4%>35
08/26/2008 VL>25    CD4>578 CD4%>38
11/04/2008 VL>25    CD4>879 CD4%>34
02/24/2009 VL>25    CD4>833 CD4%>36
05/04/2009 VL>25    CD4>762 CD4%>37
08/25/2009 VL>25    CD4>823 CD4%>37
10/21/2009 VL>25    CD4>1025 CD4%>34
03/13/2010 Vl>25     CD4>745  CD4%>34
04/06/2010 VL>25    CD4>877  CD4%>35

Offline Catman

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    • Who is the Catman?
Re: lipodystrophy
« Reply #6 on: May 12, 2007, 02:17:04 PM »
 I've been positive for over 21 years and have never seen anyone with the so called buffalo hump. To me it was like a legend that people would talk about. After reading this thread by johnnyquest, and because he was on the same cocktail that I had when the lipo began, I got curious and after having a hard time to find a photo of this condition I went into images and found only one (and that was enough) The picture was of a 52 year old man with a hump the size of a football! I was deeply impressed, and the thought of those persons having to deal with this condition made me feel worse. I NEVER thought this could develop into that size! I cannot even think which is worse: having lipodystrophy (as I do) or having a buffalo hump. Both affect our body image and our self esteem. To make it worse, other people notice these conditions when they are in very developed stages. I had a facial pmma treatment and by luck was changed to another position at my job and my lipo image has disappeared. People think I've gained pounds because of the more "relaxed" area where I'm now at. I haven't gained a single pound (always stuck at 145lbs), but since the face looks normal, the body lipo is well hidden. I am so tired of all this hiv crap and cocktail secondary effects. Our lives have taken a difficult coarse and I only wish that all this comes to an end soon. Of coarse, I'm referring to a cure to get this over with and continue with our daily lives...My thought for those persons who suffer because of buffalo hump or lipodystrophy is to love yourself no matter what changes our bodies go through. We have to think beautiful and try to fool our mind with this to see if we can take advantage of the power of thought. Hang on there, baby! :-*
« Last Edit: May 12, 2007, 02:37:51 PM by Catman »

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline brlazarus

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Re: lipodystrophy
« Reply #7 on: June 03, 2007, 09:16:21 AM »
My experience is similar to jonnyquest's. I was diagnosed in 1991 and was put on AZT (this was before the cocktail and viral load measurement). By 1996, my T-cells had dropped to nearly zero and my viral load was 450,000. I contracted cryptosporidiasis. I was a diarrhea machine with unbearable abdominal pains. There was no treatment (except Dapsone, which did little to help) and it was the only time my doctor personally called me at home: I was given two week to two months to live. Luckily (I guess), it was just at that time that the protease inhibitor Crixivan became widely available. My doc thought it wouldn't work because nothing stayed in my system long enough and my absorption was nil. But, miraculously, my immune system recovered to a point where I was able to fight the parasite. Within a few months, my T-cells jumped up above 500 and my viral load dropped two logs (down to about 1,800). Within another few months, my viral load was undetectable. (During this whole time, I was somehow able to keep my job, even though I looked like walking death.)

I developed lipodystrophy from Crixivan: pie face, barrel body, thin extremities (I'm already slight of build, but the change was noticeable). I developed a buffalo hump as well. While I was glad to be alive (my doctor--who treated almost every case in the Baton Rouge area--later told me that I was the only AIDS patient of his who survived crypto), my body changes and self image made me very depressed. I began testosterone therapy. I was eventually switched to two nucleoside reverse transcriptase inhibitors and one non-nucleoside; however, D4T gave me the gaunt-cheeked lipoatrophy. I insisted on switching regimens. At some point my BMI was indicated for Serostim, the human growth hormone. I was exercising at the time and I became quite muscular (I could pick up a coffee cup and a muscle would grow), but the joint pain was bothersome, particularly in my hands (I'm a graphic designer and play the piano, which became almost impossible). My buffalo hump receded and I felt energetic and my self image improved. I continued exercising two to three times per week--combination of 20 minutes intense cardio and weights. I was also put on Oxandrin, an anabolic steroid.

But, I got into a terrible relationship and stopped exercising over the past year, and the buffalo hump has returned. I refuse to take off my shirt in public. My testicles have shrunk to about the size of two hazelnuts because of the testosterone replacement therapy and the Oxandrin. I'm embarrassed to undress in the locker room at the gym. It has been a year since I've gone to the gym, but I feel the need to return for help with stress, sleep, self image, etc. I think for me the aerobic exercise helped reduce the size of my hump, plus my upper body musculature makes it less noticeable.

Like many here, I'm tired of taking all of these medications. My doctor said he's no longer treating AIDS opportunistic infections but rather complications from the medications, particularly heart disease. My HDL is precipitously low and am at risk for heart attack and stroke (even though I'm only 43). I just got my recent tests back and my viral load is still undetectable (11 years now!) and my T-cells are 1,250. I'm tempted to take a drug holiday to help with some of the side effects of the meds and to hopefully reduce the lipodystrophy. But I guess that's a topic of another forum. I wish there were some alternative therapies that were reliable. Better yet, I long for a cure for this insidious virus. I try to hold my head up, but when I do, I'm reminded of my situation by that lump of fat on the back of my neck.

Offline aztecan

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  • 32 years positive, 60 years a pain in the butt
Re: lipodystrophy
« Reply #8 on: June 04, 2007, 01:06:42 AM »
Boy, all these stories sound so familiar.

I started Crixivan in May 1996. I stopped taking it one month ago.

I have had the lipoatrophy for some time, but never really worried about it. Then the hump started to form at the top of my spine. Then two more lumps, one on each side of the base of my skull. Then the front of my neck started to balloon.

I knew I shouldn't have quit smoking and gained those 15 unwanted pounds.

The gut is there too.

So, now I switched to Sustiva, which may or may not cause the hump to continue. We'll see.

From what I have been able to learn, liposuction and other removal methods have mixed success results and the hump often returns.

Some people have reported the humps disappearing after they stopped a particular medication. I hope this might happen with me. I guess time will tell.

Anyone know if dropping a few pounds might reduce the humps? I wouldn't mind dropping back down to 158. I was there for years, till earlier this year.

Hang in there.



(Who wonders if Jack sounds like Darth Vader?)

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline jack

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Re: lipodystrophy
« Reply #9 on: June 04, 2007, 09:05:24 AM »
No, I dont sound like him, but I my head,and neck looked like his helmet for a couple of years. I had lipo on the back of my neck which reduced the size of those fat deposits greatly,even though I still have a lot of fat there. I was unable to go out in public,cause whenever I did I would run into someone I know and the questions would start. what happened to you? what is wrong with your face? Why is your neck so fat? People would see my legs and arms with veins popping out and ask me if I was working out. My face is still fucked up and I hate to have my picture taken especially with any of my brothers, cause it is so obvious something is wrong. You know what is really weird, I know several physicians who we go out with and they never say anything. They never ask about my enormous parotids or sunken cheeks. I used to have next door neighbor who was doctor and she was divorced,so she would eat dinner with us almost every night, we are great friends,and she has never said anything about my appearance.
The fat in the front of the neck is just the worst because you cant hide it. I also have the two very hard lumps of fat behind my ears.

Offline tigger2376

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Re: lipodystrophy
« Reply #10 on: June 30, 2007, 09:04:34 PM »
I SO empathise...in the last 3 months I've been asked at least 5 times if I'm pregnant! Had a temporary ray of hope whem my ID doc considered me for a drug trial, but it contains ephedrine, so I cant take it due to by high blood pressure...caused by...weight gain!
I see a stranger when I look in the mirror, a fat blob. My sex drive is NIL and I'm just trying desperately to claw my way out of the mire of depression this is causing...my poor partner cant even generalise about weight without me getting arsey!
It DOES help knowing I'm not alone, and I know others are in a far worse position, but sometimes, as people have already said here, this virus  just takes the piss!
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!


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