FOCUS LIPOATROPHY Keeping HIV Undetectable, Inside and Out CREDIT TK HERE Supplement Want to more POZ info magazine Tekay? Check out www.poz.com for more information LIPOATROPHY (ABBOTT) POZ FOCUS
Saving Face and Arms and Legs Meds keep your viral load low but sometimes they make your HIV detectable to the eye. DAVID EVANS provides the skinny on ways to prevent and treat lipoatrophy. MMany HIV-positive people who are on meds worry about the side effects of treatment. From gastrointestinal ills to fatigue to anemia, the side effects of the lifesaving meds we take can sometimes interfere with daily living. Many can be managed by lifestyle changes, over-the-counter drugs or adjustments to your regimen. Managing side effects is important so that they don t keep you from taking your meds on a regular basis, as skipping doses can lead to drug resistance. Of all the side effects you worry about most, lipoatrophy the loss of fat in the face, arms, legs and butt that has become a hallmark of HIV infection often ranks high on your list of concerns. Keeping HIV undetectable inside your body is critical; for many of you, wanting to keep HIV undetectable on the outside is equally important. Lipoatrophy can dramatically change the way you feel about yourself. Some people with lipoatrophy say they feel it makes obvious to others that they are HIV positive. And though we ve come a long way since HIV was first discovered in the early 1980s, the stigma surrounding HIV remains. Therefore, many people living with HIV are less than Published by Smart + Strong, publishers of POZ and POZ.com. Copyright 2007 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise, without the written permission of the publisher. Send feedback to POZ FOCUS c/o Smart + Strong, 500 Fifth Avenue, Suite 320, New York, NY 10110. Tel: 212.242.2163; poz.com. Editor-in-Chief: Regan Hofmann Art Director: Mark Robinson Managing Editor: Jennifer Morton Executive Editor: Tim Horn Designer: Will Plummer Publisher: Megan Strub POZ FOCUS is an educational series on specific topics relevant to HIV. The editorial content is independently produced by Smart + Strong. This POZ FOCUS was supported by advertising exclusively from Abbott Laboratories. 1 POZ FOCUS LIPOATROPHY poz.com Illustrations by Alison Seiffer
willing to talk openly about the disease or let their bodies reveal to others that they are HIV positive. John Ramos, who has been living with HIV for more than 20 years and battling lipoatrophy for 10, says, [Lipoatrophy] makes you have a lack of confidence when you re out in public. Dreading the onset of lipoatrophy doesn t mean that you re vain. It s a reasonable concern. In fact, some studies have found that people with HIVrelated body-shape changes are more likely to suffer from depression than those who don t have them. The depression can be the result of not feeling in control of your body, not liking the way your body has changed or fear and concern that your body is going to give you away, signaling to others you are HIV positive. The fear of lipoatrophy, especially if there s evidence that it is already happening, causes some of us to want to skip HIV medication doses or to stop taking them all together a decision that can lead to drug resistance. A key issue to remember, however, is that we have a much better sense as to which HIV meds cause lipoatrophy not the protease inhibitors, but a few reverse transcriptase inhibitors. And the doctors who treat us say that avoiding the use of the offending drugs has resulted in fewer people developing it. Talking with your doc about lipoatrophy can be tricky business. Studies show that people with HIV and their care providers don t always see eye to eye when it comes to diagnosing fat loss. You, a loved one or a colleague may see it, whereas your doctor may not. It can happen the other way too your doc may see fat loss that isn t apparent to you. This POZ Focus will give you the information along with a tip or two to help you communicate with your doctor about your lipo fears or concerns. We ve come a long way in understanding what causes it (and what doesn t). Here, we review ways to prevent lipoatrophy from happening, and for those who already have developed it, we ll share strategies for halting and sometimes even reversing unwanted fat loss. The Latest on Lipo Some lose fat and some gain it. But only lipoatrophy has been linked to HIV and its meds. Lipoatrophy (fat loss) is one set of symptoms that fall under the catch-all term lipodystrophy. Lipoatrophy refers to a loss of body fat, notably in the limbs, whereas lipodystrophy also describes a buildup of fat deep within the body and unhealthy changes to fats and sugar in the blood. Initially experts thought that all of these symptoms were connected. But in recent years research has shown that it is more likely that they re unique syndromes with different causes. According to the large, ongoing Fat Redistribution and Metabolic Change in HIV Infection (FRAM) study, which started in 2000, the increase in fat in the belly and elsewhere in the body, dubbed lipohypertrophy, appears to be associated far more with age and lifestyle factors than with HIV infection or the drugs used to treat it. Lipoatrophy, however, was concluded to be a genuine HIVrelated problem as it occurred much more frequently in HIV-positive than HIV-negative study volunteers. Fat Facts Not all body fat is alike. Nor are the fat gains and losses seen in people with HIV. There are two types of fat: 1 2 Subcutaneous Fat This is the soft, mushy fat that sits just below the skin all over the body. Visceral Fat This is a dense, harder fat that usually lies primarily under the muscles and deep in the gut. There are three types of HIV-related fat changes: 1means change. This refers to a Lipodystrophy Lipo means fat, and dystrophy cluster of symptoms that includes both unusual fat losses and gains and abnormal changes in cholesterol, triglycerides and sugar in the blood. 2 Lipoatrophy Atrophy means to shrink or disappear. Lipoatrophy refers to the loss of subcutaneous fat. It is most noticeable in the face, arms, butt and legs. 3 Lipohypertrophy Hypertrophy means to grow or accumulate. This condition refers to increases in visceral fat within the abdomen as well as subcutaneous fat between the shoulder blades ( buffalo hump ) and in women s breasts. Want to learn more? Check out poz.com for more information. LIPOATROPHY POZ FOCUS 2
looking at options Liz Kahn, a 52-year-old woman who just moved from the Bronx to Bradley Beach, New Jersey, has been living with HIV since 1987. Noticeable fat loss in her legs and arms took her by surprise last year. I had no idea this would happen, she says. I look like Humpty Dumpty with my legs and arms so skinny and my body blown up in the middle. Though she s normally physically active, Liz feels her body-shape changes are taking a toll on her lifestyle: I don t even want to go to the beach because people say, Why are your legs so thin? When Liz s doctors were unresponsive, she went online and looked for information on her own. Her research led her to switch a part of her treatment regimen (with her doctor), from Combivir to Truvada. Though Liz hopes the switch will keep things from getting any worse, research suggests it may help her quest to restore the lost fat. The Lipo-Med Link They re all lifesaving, but some can be body changing. How fat-friendly is your drug regimen? IIf you re hoping to avoid lipoatrophy or possibly reverse it, a key issue to consider is your choice of drugs for your antiretroviral treatment regimen. Contrary to popular belief, protease inhibitors have not been shown to be a cause of lipoatrophy, although they have been linked to problems involving triglycerides and cholesterol. Research suggests that some nucleoside analogue reverse transcriptase inhibitors, or nukes, are likely the reason. But they may not be the only one non-nucleoside reverse transcriptase inhibitors, or non-nukes, may also contribute. When researchers first began looking for the causes of lipoatrophy, they suspected it might be due to damage some antiretroviral drugs can do to mitochondria, the power generators of human cells. If mitochondria are damaged, cells can t repair themselves or multiply. In the case of lipoatrophy, scientists believed that damaged fat cells were being cleared from the body without any new ones being made to take their place. Some nukes, it turned out, ended up being the mitochondria-damaging offenders. The nuke Zerit (stavudine) has been linked to lipoatrophy. To a lesser extent, zidovudine (AZT) found in Retrovir, Combivir and Trizivir has been implicated as well. In clinical trials, patients who started HIV treatment with stavudine or zidovudine were more likely to develop lipoatrophy than those taking the nukes abacavir (found in Ziagen, Epzicom and Trizivir) or tenofovir (found in Viread, Truvada and Atripla). To help lower the risk of lipoatrophy, many docs avoid or at least delay the use of suspect nukes. Eric Daar, MD, chief of HIV medicine at the Harbor-UCLA Medical Center, employs this strategy. He says, We re not using [stavudine] and we re also using less [zidovudine]. When we do use [zidovudine], we re looking carefully for lipoatrophy, and if we notice it we talk about making an early switch. Is avoiding these nukes resulting in fewer people developing lipoatrophy? I believe this is true, says Dr. Daar. Nuke avoidance, however, isn t always possible. Ricky Hsu, MD, an HIV specialist in private practice in New York City, stresses that people starting HIV treatment for the first time can and should avoid these meds, but they may become necessary down the line if drug-resistant HIV becomes a problem. I want to make sure if patients need to use them that they aren t overly stressed about going on them, he says. There are new experimental treatments coming, and maybe one day soon we can stop using [these drugs] altogether, but for now they are what we have. While the nukes deserve their place at the top of the fat-loss list, other HIV drugs also deserve scrutiny. Early lipoatrophy research suggested that protease inhibitors might be to blame. While it s possible that these drugs can affect how fat cells reproduce, there haven t been any large studies indicting them as a cause. A recent AIDS Clinical Trials Group study, ACTG 5142, unexpectedly found that the non-nuke Sustiva was associated with fat loss in the arms and legs. The trial compared three treatment regimens: Sustiva with two nukes, Kaletra with two nukes, and Kaletra with Sustiva and no nukes. Though the study found that Sustiva with two nukes controlled HIV slightly better than Kaletra and two nukes, it also showed that people on the Sustiva combo were more likely to have fat loss. Dr. Hsu was surprised by the study results but points out that patients taking either stavudine or zidovudine were the most likely to develop lipoatrophy, compared with those using tenofovir. Still, he says, the difference existed between Sustiva and Kaletra. Though Dr. Hsu hasn t significantly changed the way he prescribes Sustiva, he says, When I m counseling patients, I can t say to them that it definitively does not cause lipoatrophy. courtesy of liz kahn 3 POZ FOCUS LIPOATROPHY poz.com
Looking for Lipo If you see something, say something. Without official tests to diagnose lipo, talking with your doc is the best bet along with taking a snapshot or two. Diagnosing lipoatrophy can be tricky business, for your doc as well as for you. You can lose a lot of fat before the image you see in the mirror each day changes noticeably. There are tools that can detect minute differences such as MRI and laser scans but they re rarely available or affordable outside a research setting. Sophisticated scoring systems that rely on dozens of measurements have also been developed, but there s a lot to be said for the most basic tool we have: visual inspection of our bodies. Even without high-tech help, you and your doc have options available to you. You can have your doctor inspect you during every clinic visit, and then you can discuss any changes he or she sees. Alternately, take a self-portrait photo or Polaroid every three or four months and compare the images with your doc. You and your doc can also use a flexible tapeline to measure the circumference of key body points (like your legs and arms); record the measurements in a journal, or your medical file, to track trends. Dr. Hsu says he looks for obvious signs of fat loss in key places; signs of lipoatrophy include deepening folds on the sides of the nose and protruding veins in the arms and legs. To increase the chance that you and your doctor will notice fat loss as soon as it begins to happen, some patient-advocacy organizations suggest the tips below. You can do them with your doctor s help, if he or she is willing, or on your own. Begin before starting HIV treatment and continue every three months. Picture This Here are some tools to look for changes to your body: Use calipers to measure the thickness of a fold of your skin on your arms and legs. Measure around your neck, upper arms, mid thighs and hips with a non-stretchy tape measure. Take pictures of your body (sans clothing) and face. Things to look for include: how prominent the veins and muscles are in your forearms, legs and hands how prominent the fold of skin is that runs from the corner of your mouth up to your nostril on each side of your face how full your face and butt cheeks look how your clothing fits, particularly how much your butt fills out the seat of your pants Want to learn more? Find more info on lipo at poz.com. LIPOATROPHY POZ FOCUS 4
About Face When fat doesn t come back, facial fillers to help restore what s lost are an option. RReversing facial lipoatrophy is possible, but it comes with a price tag. Approved by the Federal Drug Administration (FDA) or not, restorative facial filling isn t usually covered by public or private insurance plans and can cost $2,000 or more. A number of facial fillers are currently available there are organic and synthetic options as well as injectable and surgical procedures. Regardless of which product you choose, it is very important that restorative therapy for facial lipoatrophy be administered by an expert, meaning a board-certified plastic surgeon or specialist with experience using the product selected to treat facial lipoatrophy (see Only the Best, below). What s FDA-Approved? To date, the FDA has approved two products for HIV-related facial wasting, one called either Sculptra or New-Fill and another called Radiesse. Sculptra requires a series of two to six treatment sessions and typically lasts for about a year. Radiesse is also temporary but appears to last a bit longer than other temporary fillers. What Else Is Available? There are many other filler options available in the U.S. and abroad, although they are not approved for HIV by the FDA. First there are temporary solutions procedures that may need repeating to maintain fullness such as fat transfers. This involves surgically removing fat from one part of the body, such as the butt, and injecting it into the face. There s also collagen and hyaluronic acid (Restylane), both of which are injected with a needle. Longer-lasting fillers are also available. These include injectable silicone oil microdroplets (Silikon 1000), polymethylmethacrylate (ArteFill) and polyalkylimide (Bio-Alcamid). Surgically implanted fillers, such as Gore-Tex, are another possibility. To learn more about facial fillers for lipo, log on to AIDSmeds.com. Only the Best Facial filling and fixing is an art. Ask your surgeon the following questions before the needles and knives come out: Are they board-certified and a member of a professional organization such as the American Society of Plastic Surgeons? How many people with HIV-related facial wasting have they treated? Will they allow you to talk to any of them about their experience? What treatments do they have the most experience using for facial wasting? What are all the costs associated with the treatment? What is their policy if you are unsatisfied with the results? Willing to Experiment John Ramos, a 50-year-old private investor from Fort Lauderdale, was diagnosed in 1987 and first noticed his lipoatrophy 10 years ago. His doctors could recommend nothing, a common situation at that time. They didn t even know what to attribute [the lipo] to, John says. Eventually he stopped taking Zerit, and his doctor prescribed steroids and exercise. The effects? John says, I became one of these muscle guys, but with a hollow face and no butt! For five years he had collagen injections in his face every six months, but with the costs mounting he decided to try an experimental procedure that promised longer-lasting results. He found a doctor who injected microdroplets of silicone in his face and butt. It took four trips to Los Angeles over several months and cost $15,000. John says, It was worth every dime [Lipoatrophy] can really sap your self-confidence. Getting treatment is not about being beautiful and glamorous. It s about taking pride in the way you look. courtesy of john ramos 5 POZ FOCUS LIPOATROPHY poz.com