The full text of the fact sheet is below. You can also download a printable PDF copy (75 kB) of this resource, or contact us to obtain hard copies.
What’s lipoatrophy?
Lipoatrophy is the technical term for the loss or ‘wasting’ of fat from the face, as well as sometimes the buttocks, upper arms legs or thighs. It’s this well-known ‘sunken cheeks’ look which most people refer to as “lipo”. Lipo is a well-documented side effect of some HIV medications, in particular, some older drugs from the class of HIV medications known as nucleoside analogues (nukes).
Lipo is thought to be caused by nukes interfering in the function and production of energy-producing components in the body’s fat cells called ‘mitochondria’. This results in the death of the fat cells under the skin, which in turn seems to cause changes to the fat tissue.
There’s now a large body research about lipoatrophy and what causes it. We understand a lot more about it than when it was first noticed several years ago, and ongoing research continues to add to this picture.
This Fact Sheet is to update you on:
- how to reduce the risk of lipoatrophy; and
- options for managing and treating lipoatrophy if you already have it.
Preventing lipoatrophy
Q: Is ‘lipo’ an inevitable side effect of HIV treatments? Is there any way to prevent it?
Taking HIV treatments does not mean you will necessarily get lipoatrophy. There are some risk factors associated with the development of this problem, but in the main, it is strongly associated with specific HIV antiviral medications. Avoiding these medications if you have other options is the best way to reduce your risk of this condition. The drugs most commonly associated with the development of lipoatrophy are:
- d4T/stavudine (Zerit); and
- AZT/zidovudine (Retrovir).
Lipoatrophy can be worse where d4T is used together with ddI (Videx), so it’s recommended these two drugs not be combined. Lipo can still occasionally occur using other nukes but it appears to happen in only a few people, and develops much more slowly than with d4T or AZT.
Fear of getting the lipo “look” is one of the main reasons some people say they are reluctant to start HIV treatments. The good news is there are now many more choices in HIV treatment, and a range of potential new drugs in development and trials. It’s possible to choose or modify your treatments in favour of combinations which do not have a strong association with lipo, but which are convenient to take and very effective in controlling HIV. Many people starting treatment for the first time may never have to use drugs like AZT or d4T, and will be at low risk of ever developing this problem.
Tip: If you are worried about lipo and you have never taken HIV antiviral drugs before, you need to talk to your doctor, and make sure you are prescribed a combination of pills that are not known to be associated with lipoatrophy.
Q: Are some people more likely to get lipo than others?
Aside from the medications you’re on, there are some other factors which mean some people may be more prone to developing lipo than others. Studies have shown that facial fat loss may be more likely to occur in men, that the risk increases with age, and that it may occur more often among people of Caucasian background.
Tip: If you’ve never taken HIV treatments, and you have any of these additional risk factors, talk to your doctor about taking combinations less likely to cause lipo. If you currently take any of the treatments known to be associated with this problem, you should discuss the possibility of changing to a different combination.
Treating lipoatrophy
This part of the Fact Sheet considers options for treating lipo. It looks at evidence for these treatments, and their availability.
1. Changing treatments
There have been a number of studies now looking at whether changing from the treatments associated with lipo can reverse lipo over time. In general, these studies have shown that lipo does not “reverse” or improve in the short term. Over a longer period of time (years rather than months), some people do see modest improvements, although no studies have shown the condition to “resolve” or go away completely simply by changing or stopping HIV treatment.
Changing your drug combination may prevent the condition from becoming worse, particularly if you are only moderately or mildly affected.
2. Cosmetic treatments and surgical options
There are a number of cosmetic or “plastic surgery” procedures that have been looked at for treating lipoatrophy of the face.
Sculptra (polylactic acid, formerly called New-Fill)
The most-researched treatment to date is polylactic acid (sold as Sculptra). This product was formerly known as New-Fill.
Sculptra treatment involves a series of small injections beneath the skin. Polylactic acid is used for a variety of purposes, such as stitches, and capsules for drugs and vaccines. It’s also used to treat scars and wrinkles. When used in facial surgery, it ‘fills out’ and so increases the volume of the treated site, and is thought to also promote the formation of new collagen, which may help correct the sunken-cheeks look of lipo.
Several studies now have shown Sculptra is safe, and reported to be effective as a cosmetic treatment for lipoatrophy in people with HIV. There’s currently a trial underway in Australia, involving 100 people. The aim is to determine whether Sculptra is effective, and the most beneficial time to use it. A growing number of HIV positive people in Australia have now had Sculptra at their own expense, or through a Victorian government-sponsored access program, with anecdotally high levels of satisfaction.
Q: What does treatment entail?
Sculptra is administered by a plastic surgeon or trained injector, by a series of small injections just under the skin. The area is then massaged. People generally have three to four separate sets of these injections, as part of a course of treatment over a number of weeks. The effect of Sculptra, however, does not last indefinitely. It’s common to need “top-up” treatments, usually every two years or so.
Q: Are there side effects?
Sculptra is reported to be safe. It’s biologically compatible with human tissue, so there’s no danger of the immunological or systemic problems that can sometimes result from silicone implants. The main side effect that can occur is a temporary reddening and swelling of the face for a couple of days following treatment. Occasionally, people report the injections to be painful. In a small number of cases, people have developed infections from the injections, requiring antibiotic treatment. However, administered properly, the risk of this should be minimal.
Q: Can I get treatment on Medicare?
No, Sculptra is not paid for by Medicare. It’s possible, though not certain, that this situation may change in the future, depending on the outcomes of current studies, and the strength of evidence for its use in people with HIV.
Q: Where can I get it and what does it cost?
In most States and Territories, there are plastic surgeons or doctors with experience using Sculptra in people with HIV.
In Victoria, there is a state government funded program which provides access through the hospital system, so you should talk to your doctor and see if you are eligible.
In other states, people are able to access Sculptra by paying for the treatment.
Treatment costs vary considerably between surgeons, depending on factors such as whether they charge full or reduced cost for the product, whether GST is charged, and what additional fees are charged for doing the treatment. Some surgeons and doctors have treated people with HIV lipoatrophy at low or reduced rates, on a case-by-case basis. For a course involving three treatment sessions, using some current examples of costs, you could expect to pay between $2,400 to $3,600.
Q: Are there plans for any other way to access Sculptra?
The National Association of People Living with HIV/AIDS (NAPWA) and its members are exploring options for creating further access to Sculptra treatment, in acknowledgement of the cost of treatment and the unmet need.
Tip: If you’d like to find out more about accessing Sculptra treatment, talk to your doctor or the Treatments Officer at your local AIDS council or PLWHA group. They should be able to provide you with locally relevant information and referral for treatment, as well as information about the cost.
Autologous fat transfer
Autologous fat transfer describes a procedure in which fat is taken from one part of the body (such the stomach) and transferred back into an area affected by wasting (e.g. the face).
There are reasons to be very cautious about whether this treatment is appropriate for people with HIV, because:
- people with facial wasting may also have wasting from other parts of the body, such as the thighs, so can be hard to find enough fat to transplant; and
- changes to fat cells induced by HIV antiviral treatments may reduce the chances of fat transfer being cosmetically effective. For example, there have been some cases where fat taken from a site affected by lipodystrophy (e.g. an enlarged belly or a ‘buffalo hump’), has resulted in people suffering from facial fat ‘expansion’ leading to an abnormal puffing of the cheeks.
Generally, autologous fat transfer is not recommended as a treatment for lipoatrophy in people with HIV.
Silicone products
Silicone is a mineral oil, which has been used in procedures like breast implants for many years. It has a controversial reputation, because liquid silicone can cause serious problems, such as inflammation, ‘rejection’ of the implant, or toxicity from silicone ‘leaching’ into the body.
Silicone implants are banned in some countries. In Australia, silicone products such as breast implants are highly regulated.
In the US, some people are reportedly using a liquid silicone treatment that is injected in small ‘micro-droplets’. At the moment, the treatment is not specifically approved for use in HIV-associated lipoatrophy in the US, and is not available in Australia.
Permanent and semi-permanent fillers
There are a range of other facial ‘filler’ products reported to have been used for lipo in the US. Not all of these have been studied in clinical trials. Some are permanent, or semi-permanent. Permanent products can’t be removed once they are in place. Semi-permanent agents may be removed but it may require a procedure to do this. One major concern with permanent fillers is should facial fat return or be restored over time (e.g. with new treatments, or by improvement from changing HIV drugs), the fillers may then distort or alter the appearance of the face.
Tip: Information about lipoatrophy research and treatments currently being used in the US or UK can be found at: www.aidsmap.com, www.facialwasting.org and www.aidsmeds.com.
These websites are for information only, and the ATPA does not necessarily endorse the information, treatments or procedures described on them.
3. Experimental treatments
Uridine
Recently, a substance called uridine, a nucleoside or protein ‘building block’, has attracted interest as a possible way of improving fat wasting.
Uridine has been looked at in test tubes, where it’s been able to reverse signs of damage to cells exposed to some HIV treatments. It’s now being trialed in humans. A conference last year heard that a dietary supplement sold as NucleomaxX, which is a sugar-cane drink containing uridine, restored a modest amount of arm and leg fat within three months of treatment in people who were taking either AZT or d4T. The studies so far have been small, but the research has generated interest and uridine is now being studied further.
Q: Is NucleomaxX available in Australia?
Currently, NucleomaxX is available as a food supplement in some countries, although not in Australia. It can be purchased over the Internet. However, NucleomaxX is quite expensive and a three month course can cost upwards of $450. At this point in time, we don’t know whether a different dose is required for people with lipoatrophy who are not currently taking AZT or d4T.
Information about uridine can be found at the following websites:
Tip: While uridine supplementation is promising, it hasn’t been well evaluated in larger randomised trials. And while initial studies suggest it’s safe, like all dietary supplements, you should discuss with your doctor whether this would be an appropriate product for you.
Other treatments being explored
Q: Are there any other possible treatments for lipo?
There have been a few small studies with different drugs that have shown the potential to increase limb fat. One of these drugs is pravastatin, which is a drug ordinarily used to lower cholesterol. More research is required in larger numbers of people before we will know if pravastatin (or other drugs) really improve lipoatrophy properly and safely.
Lipo of the arms or legs
Q: Is there anything I can do about lipo in my arms and legs?
Apart from what has been discussed above, the other thing someone with lipo can do is to go to the gym. Building muscle mass can help to make the arms and legs look ‘fuller’ and can help to counteract the ‘skinny look’ that some people can develop. If you are going to start weight training, talk with a physiotherapist or an HIV-friendly gym instructor about a safe and practical workout plan for your body. Avoid heavy aerobic exercise that could further reduce the fat stores under the skin, and eat good foods rich in low-fat protein that will help you build up your muscle mass.
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