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This Month in HIV: A Podcast of Critical News in HIV

This Month in HIV: 2009 Update on Body Shape Changes and HIV/AIDS

A Conversation With Dr. Donald Kotler and Patient Activist Nelson Vergel

April 2009

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.

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Nelson Vergel: Dr. Kotler, another issue is the actual word that we use for these changes. People have been using the word "lipodystrophy" for a long time. Is that still a correct word for what's happening in HIV?

Dr. Donald Kotler: Not really, though when you say it, everybody knows what you're talking about. So you could probably get away with it. But lipodystrophy, the classic lipodystrophy, really referred to genetic problems. It was something that people were born with that, as they developed, would show the wasting, would show the thinning of the skin in their face and arms and legs, etc.

The term lipodystrophy with respect to people who are HIV infected is used to mean anything -- fat loss or fat gain, which are not necessarily related, diabetes or high cholesterol, which, once again, may or may not be related to any of the other problems.


We would probably be better off if we were to call fat gain "lipohypertrophy," fat loss "lipoatrophy," and then talk about problems with sugar and fat separately, rather than try to make them all into the one thing.

Nelson Vergel: It is not one thing; they are different syndromes that may happen together or separately.

Dr. Donald Kotler: Right.

Nelson Vergel: You're saying that lipoatrophy -- which is fat loss under the skin in the extremities (e.g., legs), body and face -- is actually not occurring as much in the United States, because we're not using AZT or d4T. But how about fat gain? Is fat gain occurring as much as we used to see it in the '90s, for instance?

Dr. Donald Kotler: Fat gain is, I believe, as common now as it's ever been. I don't think that that's really changed. About one-third of the patients complain of fat gain.

Bonnie Goldman: Are most of the complaints about belly fat? Or are people still seeing fat gain in their neck? Is there one that's more likely?

Dr. Donald Kotler: Belly fat is much more likely. Belly fat is, like I said, a problem in about a third of the patients. Of the people who gain fat behind the neck, probably somewhere between 5 and 10 percent will have a big growth.

Interestingly enough, there are some obese people, who are not HIV infected and not otherwise ill, who actually have small humps. The humps are called buffalo humps, but in HIV, they seem to grow much, much larger.

Nelson Vergel: Dr. Kotler, how does somebody know if they're gaining more weight than normal because they're eating more, or whether it's something related to HIV, or HIV medications?

Some people complain about increased appetite once they start HIV medications. Is the fat gain related to their caloric intake (i.e., how much food people are actually taking in)? Or is there something else -- maybe the fact that their immune system may be getting better?

Dr. Donald Kotler: You know how much weight you can lose when you're sick and then, after you're done being sick, how much weight you can gain, and how fast you can gain weight just when you become healthy?

It turns out that when people start their antivirals, especially when the T cells are down around 200, they are sick. They may not know it. They may not realize it. But they're sick.

If you think about it, antivirals are not appetite stimulants. They're not anabolic agents. So how come people are gaining so much weight? I think the answer to that is that they were sick and had lost weight; so people were thinner than they would normally be and when they take antivirals, it brings them back to a normal weight -- "normal" in the United States is at risk of obesity.

Nelson Vergel: So it is actually better for somebody to start treatment when they're healthier, if they want to avoid any body changes? Is that it?

Dr. Donald Kotler: The literature would say yes. People have looked from the very start as to what makes people lose weight, what makes people gain weight. It turns out that it's a lot of things. Things related to the patient -- for example, family history.

Before you got HIV, if you were 280 pounds, you're probably a lot more likely, when all is said and done, to complain of a big belly than to complain of skinny legs. Whereas if you started out 5'10", 130 pounds, you are probably much more likely to complain that your face looks bad or the veins in your legs are really prominent, than complain of having a big belly.

If everybody in your family is obese, you're probably more likely to have problems on therapy by being obese rather than being skinny.

Nelson Vergel: Have you seen any differences whatsoever with respect to what people start with? Different types of HIV treatments? Are there any data out there that show whether people who start, for instance, on Atripla [efavirenz/tenofovir/FTC] versus Kaletra [lopinavir/ritonavir] or Truvada [tenofovir/FTC] have any differences in body changes?

Dr. Donald Kotler: There are not a lot of data on that, I must say. I don't know that I answered the last question well enough. But, there are many factors that will affect what happens to the patient. These factors can be related to the virus, they can be related to the HIV medication or they can be related to the patient himself, or herself.

For example, family history is related to the patient. Taking a drug like d4T is related to, obviously, the drug. Many people have several of these predisposing factors.

Nelson Vergel: Lipodystrophy (or what we used to call lipodystrophy and are now calling metabolic disorders) also includes increases in triglycerides and cholesterol, especially the bad cholesterol, and decreases in HDL [high-density lipoprotein], the good cholesterol.

Are people with increases in cholesterol and triglycerides more prone to having belly fat increases? Have you seen anything on that subject?

Dr. Donald Kotler: In general, people with a lot of belly fat tend to have increased levels of cholesterol. But there are some medications that, even if given to people who are very thin, will cause cholesterol levels to go up. And there are certain genetic tendencies in people that may make their cholesterol go up high, often when they take antivirals, whether or not they are obese. So you don't have everything or nothing. You can have a big belly and high cholesterol, but you don't necessarily have to have a big belly to have high cholesterol.

Bonnie Goldman: Dr. Kotler, can you specify which medications you are referring to in terms of raising the cholesterol, or raising the fats in the blood?

Dr. Donald Kotler: The one that does it more than any other is ritonavir [Norvir]. It turns out that it depends on how much you take. If you take, for example, the drug Reyataz [atazanavir], you only take one Norvir. If you're taking Kaletra, on the other hand, you take two Norvir. If you take the drug tipranavir [Aptivus], I believe you end up taking four Norvir in a day -- because that's what you need in order to get good drug levels to keep the virus under control. But it turns out that the more Norvir you take, the higher the fat levels are in the blood.

Bonnie Goldman: In Kaletra, you're taking the Norvir within the one pill that you're taking.

Dr. Donald Kotler: Right. You don't take a Norvir tablet. It's inside the Kaletra tablet.

Bonnie Goldman: Many people aren't aware that when they're taking Kaletra, they're also taking Norvir.

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Copyright © 2009 Body Health Resources Corporation. All rights reserved. Podcast disclaimer.

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.


This article was provided by TheBody. It is a part of the publication This Month in HIV.
See Also's Lipoatrophy Resource Center
Ask a Question About Facial Wasting at The Body's "Ask the Experts" Forums
More on Facial Wasting/Lipoatrophy

Reader Comments:

Comment by: Christopher (Melbounre, Australia) Thu., Dec. 17, 2009 at 2:47 am UTC
Your article is a sham as there is no fat redistribution simply by HIV. It is all caused through the poisonous drugs you peddle off on this cheap excuse for a pharmaceutical advertsing billboard. Shame on you all.
Reply to this comment

Comment by: Andrea (Houston, TX) Tue., Nov. 10, 2009 at 11:18 am UTC
well charmaine my friend said to drink water after eating and that will make you like more fatter idk if it works but its worth a shot :)
Reply to this comment

Comment by: Christo Johson (Zambia) Tue., Nov. 10, 2009 at 5:57 am UTC
What can I do to remove fat on my belly and back of my neck. Is there any doctor you know in Zambia who is able to carryout sculptra?
Reply to this comment

Comment by: charmaine (everywhere) Wed., Nov. 4, 2009 at 8:46 am UTC
I am trying to find a way to put body fat back or gain weight.I have tried everything from ensure, pills n eating like a pig. Does anyone have any suggestions?????
Reply to this comment

Comment by: pradhan,mbbs, (india) Mon., Oct. 26, 2009 at 3:05 pm UTC
this is lengthy. expert talks by each , what we all knew so far, and what these two [ professional and PLWHA ] real specialists now wish to add, wld help us, in future.
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Comment by: david (philadelphia) Thu., Sep. 10, 2009 at 10:43 pm UTC
Sculptra has an assistance program to get the product cheaper or even free. The bigger problem is the outrageous fee the doctor charges to inject it.
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Comment by: Vivian Hernandez (New York, NY 10021) Mon., Apr. 13, 2009 at 12:37 pm UTC
I am currently taking Trizivir and took a holiday when I noticed fat in the back of my neck...I suffer real bad from lipodystrophy. I tried Atripa but didn't like it at all. I am now on a serious low fat, high fiber diet. Is there any way I can ward off buffalo hump?
Reply to this comment

Comment by: AK in Mass (Berkshire County, MA) Fri., Apr. 10, 2009 at 10:14 pm UTC
Dauphneelee is right on! This is same old info; what about updates from those who DID get Medicare to pay for their treatments? What about info on good vs bad experience with fillers and implants?

While new cases of lipo are now a thing of the past, there are thousands of us who still need help. Ive had 4 Sculptra treatments 5 years ago, and while it's not perfect, I am beter than if I had had any.

Recently, after a serious bout with bronchitus and pnemonia, I found my belly expanding- due to water retention of the fat cells. I take "water pills" and its slowly dehydrating, but it looks awful. and my size 32, has expanded to a size 34. Thankfully my weight is fine (155lbs). Has anyone else had the same problem?
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Comment by: Barry (Los Angeles, CA) Thu., Apr. 9, 2009 at 4:32 am UTC
If your health insurance is governed by a state agency, then it's best to check with that agency about their policies governing facial filler. Such as in CA, it is not considered "cosmetic" as defined by CA STATE ASSEMBLY BILL AB1621.

However if your insurer is governed by Medicare, state regulations do not apply. In this case, google facial liloatrophy and you will find a host of info, incl. a same letter describing the psychological and mental effects of not treating disfigurement due to illness or treatment for illness.

The next best step is to write your state and federal legislators to advocate for you. Often times this may require a letter describing the problem and why it should be considered a medical treatment and not cosmetic.

Another source for support is enlisting the help of the manufacturers of facial fillers such as Sculptra and Restelayne, as they have a deep financial stake in getting the treatment approved.

Finally compare the treatment to reconstruction after breast removal or hair lip surgery. That may make your letters more "human."

I'm working on the issue from the Medicare viewpoint, as that's who regulates my health insurance carrier.
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Comment by: Marie (new jersey) Fri., Apr. 3, 2009 at 12:13 pm UTC
I am trying to get my insurance to pay for my facial fillers. My dermatologist has sent a predetermination letter and I was informed that the codes were not correct. Can you tell what codes should be used and the proper verbiage for the letter. Thanks
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Comment by: Robert Garrett (Ft Lauderdale, FL) Thu., Apr. 2, 2009 at 2:10 pm UTC
Can Deca contribute to belly size?
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Comment by: DaphneeLee (rural NC) Thu., Apr. 2, 2009 at 1:49 pm UTC
After reading article there was nothing NEW to learn about LIPO. Well to be fair, he did go into great detail breaking down the differences and such but this is all old news, nothing new and the Doctors in US/HIV are still scratching their heads as to what to do. All this article demonstrated to me was we still have not moved forward and we desperately need to involve ourselves politically and educate and demand that our comprehensive medical needs be a part of best medical practices for our well being.
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