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Lipo: A Trophy?

By fogcityjohn

December 17, 2009

This post describes my personal odyssey with the condition known as lipoatrophy. I warn you that the post is long, and I apologize for that. But since my experience is rare, I thought it best to lay it all out in detail. I also think that my story holds a lesson for all medical professionals who deal with HIV, and I'll get to that at the end. I'd also be very interested in hearing from anyone out there who's had a similar experience. Having gotten those preliminary recitals out of the way, here goes:

In 2004, at one of my first appointments after being diagnosed with HIV, I remember telling my doctor that I wanted to make sure my parents didn't find out I was positive. I expressed my fear that taking antiretrovirals would cause me to develop lipodystrophy and give me the gaunt, wasted visage that a friend of mine calls "AIDS face." My doctor told me that my concern was overblown. It was true, he said, that some of the older medications caused lipo, particularly the ones he called the "D drugs." I didn't need to worry myself unduly, though, because he told me that physicians now know which medications tended to cause the condition, and there were now treatment options that would let me avoid those. So I breathed a little easier.

Then he gave me some more reassuring news. My viral load had dropped from its initial reading of 5,282 to 1,059, while my CD4 count had increased from 578 to 699. With my numbers, he said, treatment simply wasn't indicated anyway, so I didn't need to worry about drug side-effects for the time being. For a while, the numbers continued on a path of gradual improvement. By my third round of labs, my VL was down to 291, while my CD4 count was at 675, with a percentage of 41. My VL soon became undetectable, and my CD4 counts rose well above 700.

In mid-2005, though, at the same time I was hearing all this good news on the numbers front, people started asking me whether I had lost weight. I found the question odd, since I hadn't lost so much as a pound, and in fact, I had noticed that my pants were getting a little tight. At first I just brushed off the questions, but then I started to remark on some small changes in my face. For example, my nose looked wider. (I later realized this was because the cheeks on either side of it were receding due to fat loss.) My face also looked a bit more angular than it had before. Initially, I wasn't all that concerned, and I put it down to aging. As the months went on, though, the changes became more noticeable. My then-partner started commenting on them. Once, he went away for ten days, and when he returned, he told me he could tell that my face was thinner than when he'd left.

In November 2005, I saw my doctor for one of my quarterly check-ups. My numbers were really good. My CD4 count was 725, my VL undetectable, and my percentage 41. "That's great," I said, "but I think I'm developing lipodystrophy." My doctor cast a dismissive glance at me and said, "You don't look like a person with lipodystrophy." And that was that. On the next visit, the numbers were good again (CD4: 748, VL: 349; 45%), but the changes in my face had definitely gotten worse. I raised the issue again, and my doctor again dismissed it, telling me I'd lost three pounds, and that was probably the explanation. He told me to eat more. I talked to him about strange sensations in my feet, and he poked and prodded them, looking for evidence of neuropathy, but they were normal on that score.

I took his advice to eat more very seriously, and began eating with a vengeance. Within two weeks, I'd gained eight pounds by increasing my food intake and supplementing my diet with Ensure. But none of the new weight seemed to go to my face, although my pants certainly got tighter. As time went on, the problem worsened, yet my doctor refused to believe I had lipo. Despite the fact that the evidence was -- quite literally -- staring him in the face, he told me I was imagining it. People like me, he said, just "didn't get lipo." Because I had good numbers, in his view, I "couldn't" have lipodystrophy.

My numbers were so good, in fact, that I soon enrolled in a study run by Dr. Jay Levy at UCSF that was investigating people who exhibited the ability to suppress viral replication without meds. It was my introduction to research into people known as "HIV controllers," which is something I'll return to in subsequent posts.

I looked everywhere trying to find information on HIV+ people who developed lipodystrophy without being on meds. I found next to nothing. I went to see an endocrinologist to determine whether my condition could be caused by something else, since I understood that the condition could be associated with diabetes, but all those tests came back normal. On one of my visits to Dr. Levy, I discussed the problem with him, and he used his good offices to get me an appointment with a leading researcher in the field, Dr. Carl Grunfeld. I saw Grunfeld once, and he told me that he thought I had HIV-induced fat loss, but that he didn't think it was lipodystrophy. He allowed, however, that he could be wrong, and told me that he'd like to know if he was. He advised me to contact him again after a few months if the condition got worse.

Months later, the condition was worse, so I e-mailed Dr. Grunfeld to tell him so. He replied that he was overwhelmed with work and couldn't see me. On my next trip to UCSF for Levy's study, Dr. Levy told me that Grunfeld had called to tell him that he'd concluded that my condition wasn't serious enough to merit his attention. I was floored. I mean, the guy hadn't even seen me again, and yet he'd somehow come to a conclusion about my current condition. People correctly ridiculed former Senator Bill Frist when he claimed to be able to diagnose Terri Schiavo after only seeing a video of her, but in a way Grunfeld had gone Frist one better. He'd decided how serious my condition was without bothering to check if it in fact had gotten worse.

At times, I almost felt as if I was losing my mind. I could clearly see that I was suffering from peripheral lipoatrophy, yet no one in the medical profession would believe me, because my numbers were too good. Then I got my "break." The strange pains in my feet were getting worse, so my doctor referred me to a podiatrist. The podiatrist looked at my feet and told me, in his soft, east-Texas drawl, that I'd lost the fat pad on the bottom of my feet. The pain was the result of the fact that I was basically walking on the tendons and nerve endings on the soles of my feet. He said I'd need to be fitted with orthotics that would substitute for the vanished fat. He took casts, and I wear the inserts all the time now.

With that diagnosis, my HIV doctor went from treating my lipoatrophy as a figment of my imagination to seeing it as an actual physical condition. Nothing about my condition had changed, of course, but a person with an "MD" after his name had recognized what was going on, and the podiatrist's recognition transformed my supposed hallucinations into concrete reality.

And therein lies the lesson I mentioned at the beginning of this extended rant. Too often, doctors allow their views to be dictated by what they think they know. My particular condition didn't fit the usual paradigm, but rather than acknowledging the fact of it and then looking at my condition as unusual or unique, the doctors just decided that it couldn't exist. They "knew" that lipo was caused by meds. I hadn't taken meds. Ergo, I couldn't have lipo. So instead of seeing this as a possible opportunity to learn about how HIV itself plays a role in causing lipoatrophy, the doctors I saw mostly chose to blind themselves to it. In this, they were a bit like the Catholic Church's astronomers who refused to look through Galileo's telescope when he offered to prove to them that the earth actually revolved around the sun. The astronomers, schooled in Ptolemy's geocentric view of the universe, didn't want to look at the actual movements of the sun and the earth. They already "knew" the answer, and they refused to be dissuaded by inconvenient facts.

Now that he recognizes that I actually have lipoatrophy, my doctor has theorized that there is a relationship between my unusual ability to control viral replication and my loss of peripheral fat. I won't claim to understand the theory. All I know is that he thinks it has to do with something called "tumor necrosis factor." If he's right, it'd be richly ironic, wouldn't it? The prize my body gets for being able to suppress this virus is a case of lipo. So maybe lipo is what I get for winning the fight with HIV, at least so far. Imagine that. Lipo -- a trophy.

To contact fogcityjohn, click here.

See Also
Outlier: My Unusual Journey With HIV

Reader Comments:

Comment by: fogcityjohn (San Francisco, CA) Fri., Mar. 19, 2010 at 5:47 pm UTC
@ CT in Los Angeles: Please note that only a minority of people with HIV develop clinical lipoatrophy. My case is very unusual, which is why I chose to write about it. You should not think that you will necessarily develop lipodystrophy. The new medications appear to be much less likely to cause it, and unlike me, most people don't experience serious lipoatrophy just from HIV infection alone. In short, I'd take a deep breath if I were you and just calm down a bit. In all likelihood, lipo is nothing you have to worry about.
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Comment by: CT (Los Angeles) Fri., Feb. 26, 2010 at 2:47 pm UTC
Thank you so much for sharing that! I believe I seroconverted 1 year before testing positive when I got some weird flu after which everyone remarked how much weight I lost, yet it had only been 5 pounds. Afterward, I wasn't sick for a year until I went last month for a regular, routine STI screening and tested HIV+. I'm feel fine, am about to start meds (cd4>375? vl=47k) and terrified of lypodystrophy which my doc assures me is unlikely, yet as your experince suggests, may have already commenced. Thanks for sharing.
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Comment by: fogcityjohn (San Francisco, CA) Sat., Jan. 30, 2010 at 9:37 pm UTC
@ Dr. Pradhan in India: Thank you for responding. It is discouraging to hear that there are doctors who take advantage of HIV+ Indians to make money when free medication is available. Of course, charlatans exist in every society (including America's), but they are especially dangerous in a place like India, where much of the population is poor, ill-informed, and perhaps more easily taken in than people in the West. I hope that you and others will try to identify such people and have them expelled from the medical profession. They bring disgrace and dishonor to real practitioners of medicine.
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Comment by: pradhan,mb 1950/ (india) Wed., Jan. 27, 2010 at 7:06 am UTC
john absolutely right. but as a lawyer, you very well know that all those are 9+ guilty of negligence, for not listening and considering your plights.=the dictum is, listen to the mother ! = even a simple basic dr like me would listen first.= osler said, listen to the patient , you fool, he is screaming the diagnosis !!!!= and you did well to publish their names.# we have a high dr here who fleeces the frightened HIV's instead of sending them to the HAART center where the meds are FREE.That is not negligence but rascally greed. =Thanks for your fine sufferers tale.
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Comment by: fogcityjohn (San Francisco, CA) Tue., Jan. 26, 2010 at 12:19 am UTC
@ Dr. Pradhan in India: While I agree that we all apply our past experience in our professional lives, my point is that the doctors I have seen about this problem appear to have allowed themselves to become prisoners of their experience. They seem incapable of considering that lipodystrophy could be caused by something other than antiretroviral medications. Worse still, they refused even to believe the evidence right before their eyes. As a lawyer, I'm concerned about what the evidence shows. Theories are very nice, but in the end, understandinhg a case comes down to the actual proof. You must follow the facts where they lead, rather than trying to make the facts fit a predetermined pattern. In my profession, I would be guilty of malpractice if I ignored hard evidence simply because it didn't fit my theory of the case. Perhaps my own professional training has led me to have different or unwarranted expectations of the medical profession.
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Comment by: dr george pradhan, mb/1950 (india) Mon., Jan. 25, 2010 at 8:53 pm UTC
=the observation that drs go by what they think they know, while correct, is justifiable, as with any other person in every other walk of life. but drs in CME keep their minds open, and weigh the position before them. especially so because of the seven!yearly alterations in guidelines and dictats, quite often contradictory to what is given down to us at the base level previously= reg fat: are we sure why fat melts at the site of the SQ inj Insulin? why the fat of the face goes first in dieting and fasting? therefore we justifiably go by our experience and even half knowledge.
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Comment by: fogcityjohn (San Francisco, CA) Sun., Jan. 17, 2010 at 8:36 pm UTC
@ Rob Cohen: Hey, Rob. Thanks for chiming in. All I can say is that my experience only illustrates something that I think we should never forget -- that we cannot assume we know anything for sure about the effects of this virus. It affects different people in very different ways, and doctors need to keep that in mind. They should not allow themselves to become captives of conventional wisdom. With HIV, the CW is going to turn out to be wrong all too often.
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Comment by: Robert Cohen (San Francisco) Fri., Jan. 15, 2010 at 4:39 am UTC
Your posting has me stunned. Great that your lipodystrophy has finally been recognized and treated. But your experience with Dr. Grunfeld is eye-opening. All I can say is "what a jerk" and I'm just glad you were persistent.

Your experience being a controller who is experiencing this condition is pretty unusual - not that that's any excuse for the responses you received. As a controller who has put on more than a few pounds over the past 9-10 years, so many that I'm struggling to lose, reading about your experience is enlightening.

Kudos to you John for opening up and starting a dialog about both the lipodystrophy and the issue of being heard by one's doctors. Thank you!

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Comment by: fogcityjohn (San Francisco, CA) Sun., Jan. 3, 2010 at 11:32 pm UTC
@ Joe in NYC: I wish I could tell you why doctors don't deal honestly with lipo. I suspect it's due to a number of factors. First, I don't think the drug companies are honest about prevalent a side-effect it is. Second, lipo seems largely unpredictable, so doctors have no idea who will develop it and who won't. Doctors don't like it when they don't have the answers. A woman I met at an HIV conference told me she tells clients of her ASO to memorize the word "idiopathic," which is just a fancy medical term for "having no known cause." That way, when they have a symptom or side-effect their doctors can't seem to explain, they just ask whether it's "idiopathic." Calling something idiopathic lets the doctor say admit s/he doesn't know without having to say "I don't know."
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Comment by: Joe (New York, NY) Sat., Jan. 2, 2010 at 8:22 am UTC
I wish doctors would be honest with this lipo problem. I have facial wasting and abdominal fat. They say to exercise and watch your diet. Well.....I was on a STRICT 1,200 cal/day diet and exercising my brains out...only managed to lose 2 lbs over 2 weeks then would gain it back. God forbid if you "marginally" go over your caloric will gain 1-1.5 lbs OVERNIGHT. If you are on PI' is a losing battle...even if you lose the weight....the fat will come off your arms and legs and accumulate around your stomach resulting in rolls. I wish doctors would tell patients this instead of trying to "keep us quiet" and feed us BS about exercise and diet. They know It's a lost cause but will not admit it, so don't fall for the "exercise" and diet stuff, these PI meds cause major fat distribution problems. As far as the facial wasting correction...who could afford 1K-1.5K X 3 for injections? Most insurance companies will not pay because they consider it cosmetic.
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Comment by: fogcityjohn (San Francisco) Sun., Dec. 27, 2009 at 8:26 pm UTC
I'm back after a Christmas break and just reading all of the comments. I don't think I can respond to all of them individually, so I'll just try to hit some key issues. I've had filler treatments for my lipo and have gotten both Sculptra and PMMA. Got the PMMA at Clinic'Estetica in Tijuana. Will be returning to Tijuana soon for a third treatment on my face. This time I'm going to Dr. Luis Casavantes. I am planning a blog post about the whole filler experience, so stay tuned. I share the frustration of all those commenters who've written to say they've been ignored by doctors who can't "think outside the box." I think Dave in Birmingham, UK has some pretty good insights on why doctors can't or won't do so, and I tend to agree with the points he made. To respond to Don in San Francisco about why I'm still with my doctor, well, like most relationships, it's complicated. Actually, he's a very knowledgeable and respected HIV doc, and except for this issue, he's done pretty well. I used his failure to recognize my lipo as the basis for a discussion with him about taking his patient seriously. I think he was a bit suprised to be confronted so directly, but I am a pushy lawyer, after all. Anyway, his listening skills seem to have improved since then. Another factor for me is that I believe very much in continuity of care, so I don't like doctor shopping. Finally, I'm glad to see that this post has generated some discussion. I wish the medical community would pay more attention to HIV's role in causing lipodystrophy. Dare I hope that some MD somewhere may be reading this now?
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Comment by: Wayne (Australia) Sun., Dec. 27, 2009 at 12:04 am UTC
I too have suffered a loss of fat under the eyes from the Virus.

This was the Question I posted to Ask the Experts Forum and the response received - may be helpful to you. Power to the people.

Loss of Fat Under the Eyes - Oct 26, 2009
I have been HIV+ for several years and have loss of fat under my eyes which is an effect from the virus as I have only been on sustiva/truvada combo for 9 months. I live in Australia and was wondering if you know of the best type of filler/surgery that I could look at utilising to give me greater confidence for myself.
Response from Dr. Pierone

Hello, and thanks for posting.
For people who have loss fat in the under eye area I think that Radiesse is a good option. The hyaluronic acid products (Juvederm, Restylane, etc) can be used in this area as well, but don't last as long. Sculptra can be used in this location, but unless the injection technique is expertly done, nodules may develop. Artefill could be used in this location as well, but since it is a permanent product, it should only be performed by someone with expertise in its use. What I don't know whether these products are available in Australia.
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Comment by: (j) Sat., Dec. 26, 2009 at 5:09 pm UTC
My problem is that I have a growth which I understand to be called "Buffallo" neck and it is giving me a problem because it keeps on growing and it is so visible that everybody is commenting about it .I do have all the other symptoms you mentioned and I'm even now ashamed to wear short wear.What can I do about this growing thing?
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Comment by: me (portland ,or) Sat., Dec. 26, 2009 at 2:42 am UTC
i dont take meds anymore.I have been through side effect hell for 5 years with hiv and 15 years with another chronic illness ...i am a medical person and still doctors do not listen "oh but it helps your numbers" if i look like crap.cant work,vomiting etc is that good for a number...i am doing better off meds and dont give a hoot what my numbers are ....i am not telling people to not take meds but make sure you fightfor your quality of life ON meds
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Comment by: Don (San Francisco) Thu., Dec. 24, 2009 at 11:16 am UTC
this is quite an interesting case. i guess some of us are "damned (to experience these changes) if you do (take the meds) and damned if you don't". thanks for sharing this. i appreciate hearing one more story of how medical professionals simply can't think outside of the box - and they take whatever box is handed to them by big pharma, or the government, or ... which leads me to the real reason i wanted to comment: what i don't understand is why patients stay with doctors like this. after all that, it sounds like you're still with the guy! granted, the vast majority of doctors fit into this category, but not all, and i would never continue seeing a doctor who didn't take me seriously and wasn't willing to work collaboratively with me on my own healthcare and wasn't able to think outside the box(es). in any case, i'm sorry to hear about your experience, and wish you the best.
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Comment by: ABC (Austin) Thu., Dec. 24, 2009 at 11:05 am UTC
Well this is tremenously validating. I am on a NNRTI regimen that is not supposed to cause lypo. I have repeatedly told my HIV MD about this but he shrugs it off. I have had Juvaderm/Perlane injections with great results but this will be very costly over time. I think it's HIV combined with aging or HIV causing accelerated aging but I'm not an "expert".
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Comment by: John (San Francisco, California) Thu., Dec. 24, 2009 at 10:52 am UTC
I've had lipoatrophy from my face to my feet since the early 1990's, probably caused mostly by the "D" drugs, but perhaps caused by HIV as well. It's very interesting to know that in your case, it's the HIV, not the drugs, that caused your lipoatrophy. Your comments about the failure of your doctor to notice the lipoatrophy reminds my of my experience in the 90's with doctors and a variety of symptoms of HIV disease and drug side effects. They're not very good at noticing or treating what they're not expecting to see.

I'd like to add a couple of comments about using synthetic fillers to restore appearance after fat loss. The best source of information about the various fillers is, a website maintained my Nelson Vergel, the founder and moderator of the PozHealth Yahoo group. A lot of us with lipatrophy have tried many different fillers to restore appearance, and some work better than others for certain purposes, and others are downright dangerous. PMMA (used by Dr. Cassavantes in Tijuana) is not the same as Sculptra, but it is the same material (but probably less refined) used in Artefill, a prohibitively expensive material (in the volumes required to correct lipoatrophy) approved in the US for filling small wrinkles. Sculptra, which is not permanent, is the only filler approved in the US for treating facial wasting. Liquid silicon oil (especially if not medical grade) is dangerous if used in large volumes to restore fat lost from lipoatrophy, but if medical grade silicon oil is injected in microdroplets by an experienced doctor, it appears to be a safe and effective way of treating facial wasting, at least in its more moderate manifestations. PMMA (injected by Dr. Cassavantes in Tijuana or Dr. Serra in Brazil) is probably the best material for filling larger volumes, but it has not been approved in the US and the quality of material used in other countries is unknown. Please do your research if you're planning on using fillers!
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Comment by: Dave (Birmingham, UK.) Thu., Dec. 24, 2009 at 6:20 am UTC
John, the point of your piece is well made. I've experienced the same "blindness" myself and had to create almighty stink to have things attended to by HIV specialists. Why are they like this? Well, one can only generalise and every situation or doctor is going to be different. But in my clinic I have observed three factors: 1. fatigue: they've been dealing with us since the 1980s and quite frankly they are suffering from "HIV/AIDS fatigue". They now just want to dish you the drugs, if you need them, and have you go away. 2. number of patients: in the clinics I have attended there are literally 100s of patients, and they see each one just four times a year, so there's no regularity and no personal relationship. 3. new ground: this is a bit connected to the "fatique" I've described above, in that a great many doctors would like to think that they're over the worst and no more new learning is necessary. They want to stay in the comfort-zone already created. These three reasons are what I have observed, but, as I said at the outset, different medics will have their different excuses. The positive thing for us to do is recognise these realities and work with them. I visited my GP the other day and had rehearsed the stuff of the "interview". First of all I had some stuff to tell her about progress in AIDS research today, because I knew she wouldn't have known about it being a General Practititoner, and then I led on to the problems I wanted her assistance with. With regard to one of these I presented the advice of a Canadian specialist in HIV but I presented the material not in a way which humiliated my GP but in a way which sought her to consider the treatement suggested by the Canadian specialist and to give her view of it. The session went well. We do have to take control. We do have to know all about our condition. But we do have to avoid being confrontational.
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Comment by: DaphneeLee (NC) Thu., Dec. 24, 2009 at 4:33 am UTC
I believe it is the virus itself that causes it in some. The drugs may have an affect as well, but I think in the future they will put the pieces of the puzzle together for HIV responsible for many changes in the body.
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Comment by: alteano (spain) Thu., Dec. 24, 2009 at 12:18 am UTC
i`am 48, diagnosed HIV 7 months ago and I' am in tratment with Atripla. I started noticing my facial fat loss 2 years ago, and put it down to ageing, have been on Radiesse injections which help to fill in the cheeck area, but not the temples. My HIV Dr is not interested, and I have resigned myself to live with this, and the expence of the injections every 6 months or so to help reduce the gaunt apparience. My bum has also flattened, and my arms show the veins. I am worried about the loosing feet fat, as that can be painful, I believe.
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Comment by: Rob (San Francisco) Wed., Dec. 23, 2009 at 11:10 pm UTC
Any form of lipodistrophy or lipoatrophy can be as damaging as the disease itself. 4 years ago I was referred to Dr. Luis Casavantes who is a very educated and talented dermatologist who's office is in Tijuana, Mexico. Luis is extremely conservative and uses pictures taken before the lipdistrophy occured to bring a person's appearance back to their "normal" or near normal appearance. He does not over do the process by making you into something that you are not. And he is able to almost completely reconstruct a butt to the extent that it looks completely normal again. What Dr. Casavantes uses is PMMA (Sculptra here in the U.S.) that he imports from Brazil. He uses different concentrations of the product according to the different areas that he is treating. He is a true artist, extremely professional and his procedures are immpeccably careful, sterile and cautious. Dr. Casavantes changed my life by giving me back my pre-lipo features. It's not about becoming something that you aren't. It's about restoring a person's appearance so that they can function in life once again. Just google Dr. Luis Casavantes if you would like to know more about him. I will continue to see him whenever necessary.
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Comment by: Barry (Los Angeles) Wed., Dec. 23, 2009 at 8:19 pm UTC
I've had facial wasting and loss of fat in my ass as well as a loss of fat between my skin and muscle. I've been through various trials, none of which seem to do much good.

Leptin is the new promising hormone for losing the fat in the belly, now being tested in Dallas.

As for insurance coverage of wasting, if you are on medicare, forget it. They just had hearings about it that ended mid-Sept 2009 and still haven't reached a conclusion as to whether this is a cosmetic or medical condition.

If you are in CA, and your insurance is regulated by the state, your insurance carrier must treat you. Its state law.

Sculptra and Restelayne have compassionate access programs, but you still have to find a doctor who won't charge an arm and a leg to do the procedure.

Finally, there are underground practitioners who use silicone to fill in the fat loss in the face and ass. I've had it done and it totally works and lasts, and is cheaper than the treatments available. They also do the same treatments in Mexico and Brazil, but that can be expensive.

Doctors hoop and holler about fat gain, yet don't see loss or VAT as a problem. Probably because its not happening to them!
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Comment by: davidj (seattle) Wed., Dec. 23, 2009 at 7:00 pm UTC
Thanks for all the comments. I'm a new HIVer and all the info I can absorb from you all is great!
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Comment by: Terry (Orange County, Ca.) Wed., Dec. 23, 2009 at 6:39 pm UTC
After 20 plus years of living with AIDS I definitely have Lipoatrophy in the buttocks, feet, legs and feet. SitRelief Shorts by LipoWear, have completely resolved the sitting pain problem from a skinny butt and the buttocks appearance under clothes. Wearing the shorts regularly has also reduced the foot pain to a great extent. (The Docs say it has something to do with padding the nerve that is bruised by a skiiny butt and not amplphying the pain signal from the feet.)Whatever the reason, the shorts work! I have found that keeping with a low glycemic index diet, I have some control over the facial wasting. L-Carnatine seems to help the nerve problem as well.
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Comment by: CF (LA) Wed., Dec. 23, 2009 at 4:32 pm UTC
I also have facial wasting and I felt had a gaunt washed out look. I new I did. And yes I was always told no. It wasn't horrific, but it sure was not helping my self esteem.I went to see Dr Mest about Sculptra and yes I did it. After 3 reatments I am pleased with the results . I had it Pre Auth'd through my insurance and was able to have them pay for it. And now my friends and partner can tell the difference.
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Comment by: AMANDA (West Palm Beach/FL) Wed., Dec. 23, 2009 at 12:04 pm UTC
I been positive for over 20 years
When it comes to AIDS is all about guidelines and trials. Yes we have new medications but they do come with a whole range of side effect as we live longer we will learn more and more about them.I refuse to see death staring right back at me so at least the use of fillers help me cope with lipodostrophy.
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Comment by: TC (New York, NY) Tue., Dec. 22, 2009 at 11:20 am UTC
Most HIV doctors are just basically concerned with keeping you alive....CD4's and VL's are what they are interested in...period. If those numbers are good then "you're doing great". There is very little concern about gaining weight, or if your face looks like Skeletor. I don't think they even have the answers to solve those problems, they just don't want to admit that to you. Basically the philosophy is "'re happy with that". I am going through the same problems. It's sad to say but.....don't even bother with HIV MD's when it comes to Lipo...Plan on seeing an endocrinologist to see what they can do.
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Comment by: (San Francisco) Fri., Dec. 18, 2009 at 12:45 pm UTC
@ Henry in NYC: I wish I could tell you whether your condition will get worse, and if so, how much. But I don't think anyone has those answers. The issue of lipodystrophy is very poorly understood, and I am not aware of a lot of research into the role of HIV alone in causing it. (It could be out there, but I'm not a physician, so it may be that I'm just not finding it.) My advice to you is to start taking a series of photos of yourself. Make sure the background, camera angle, and lighting are always the same. Take photos of your face every month -- one front, one right profile, one left profile -- and compare them to see if you perceive any changes. The changes come slowly, and it can be easy to miss them as you get used to seeing your face. Over a period of six months or so, you may begin to see a pattern. Best of luck to you, my man.
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Comment by: Henry (NYC) Fri., Dec. 18, 2009 at 11:12 am UTC
I'm 47, have been poz for ~4 years. I had VL of about 9k and CD4s b/w 350-600. I started meds in July 2009 (Isentress/Truvada). Now UD and will know CD4s in 2 weeks. Basically: I was noticing the exact same thing you describe for the past 2 years, slight loss of fat on my cheeks (both face and butt!). My doctor said same thing yours did. Since it's "mild" and does not look glaring it's easier to dismiss. My concern is how much worse will it get? Part of it is aging, but part of it is definitely HIV itself, not any meds.
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Outlier: My Unusual Journey With HIV



My name's John. I'm 49 years old. I'm a lawyer by profession. I now live in beautiful San Francisco, California, after spending a long time on the east coast. I was diagnosed in 2004, so I've been positive for something like five years.

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