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Avoiding & managing side effects – May 2008
Contents. 
T-20 side effects. 
Lipodystrophy 
Fat loss (lipoatrophy).
lipid = fat, dystrophy = disorder.
More about lipodystrophy:
Lipodystrophy is a difficult side effect to write because there is still no agreement on the underlying cause of these symptoms.
This is important to understand, because you may want your doctor to make changes in your treatment, even though studies haven’t shown that one particular approach will work.
Although awareness of lipodystrophy has improved, you may still have to take an active role in getting the best monitoring and treatment.
This booklet was revised in May 2008. Our understanding will hopefully advance over the next few years and it is important to follow results from new research from scientific meetings.
There are three broad sets of lipodystrophy symptoms:
Any discussion about lipodystrophy therefore needs to refer to specific symptoms.
Fat loss has been linked to nucleoside analogues and fat gain has been linked to protease inhibitors. Both fat loss and fat accumulation have been reported by people using NNRTI-based combinations. At least one study showed that lipodystrophy occured more often when using a three-class combination with PIs, NNRTIs and nucleosides compared to two-class regimens.
However, not all drugs in the same class have the same risk of symptoms.
Lipodystrophy is likely to be the result of several different factors rather than any single cause. These include HIV infection, individual drugs, when treatment was started and family health.
Lipodystrophy has been reported in men, women and children from a wide range of racial backgrounds.
Depending on what is being defined and measured, lipodystrophy has been reported in 5-80% of people on treatment. Only a smaller percentage of people will show clinical symptoms. In order to treat HIV, we need to recognise that many of the current drugs affect the way our bodies process fats and sugar.
Over the short-term, most people do not have serious problems. The benefits from treatment still clearly outweigh the risks. However, for a significant minority of people the problems can occur more quickly, or can become more serious.
Preventing lipodystophy is more important and more successful than trying to treat lipodystophy after it has developed.
As no one can predict who will be affected before starting treatment, monitoring in order to change treatment if you get early symptoms is very important.
There are several ways that changes in body fat distribution can be measured and monitored.
Most people are more sensitive to physical changes related to fat distribution in their body, than their doctors are. This means that ‘self-reporting’, perhaps with careful measuring by a dietician, or photography is more likely to provide a record of any change.
If you are worried that you have lipodystrophy, make sure this is taken seriously. You should be offered monitoring and have any treatment choices explained.
Some HIV clinics may have access to scanning equipment, but in practice lipodystrophy is rarely monitored in this way. MRI and DEXA scans look at the breakdown within your body of fat and muscle. A test called BIA (Bio Impedance Analysis) is also reliable. (See side bar for more details).
Getting a DEXA scan, or well-lit photo, even if you only have slight changes, will give you a reference to know how quickly symptoms are progressing or improving. Some specialist clinics, including the lipodystrophy clinic at St Thomas’ Hospital in London (to which you can self-refer), provide baseline DEXA scans to all patients.
Like your CD4 and viral load results, single test results may not provide much useful information, and you may need several tests over time to monitor changes.
If you are worried that you have lipodystrophy, make sure this is taken seriously. You should be offered monitoring and have any treatment choices explained.
Switching from d4T or AZT can reverse fat lost from limbs. This is supported by several studies. It is discussed in more detail in the section on lipoatrophy.
With fat accumulation, most of the studies looking at switching individual drugs have been less helpful. These are discussed in the section on fat accumulation.
But, just because studies haven’t shown a benefit, doesn’t mean that other treatments may not be better for you. Whether you decide to change your treatment will depend on several things, including:
Many doctors are reluctant to change a combination which has worked well in terms of viral load and CD4 results, especially if you were previously very ill. However, this may not be appropriate if lipodystrophy has significantly reduced your quality of life.
If you change your combination, you have to change it to one that is effective against HIV. If you developed resistance to earlier combinations, this will affect your choices.
These tests can monitor changes – and baseline measures by a dietician for everyone before starting treatment would make interpreting later changes easier.
Measurement: careful measurement by a dietician using calipers can be useful if nothing else is available. This may be useful for fat increases but will be less sensitive for fat loss – and will not help for facial fat loss. Unless the changes are very marked then this may not be sufficiently accurate and may vary depending on the dietician.
DEXA scan (Dual X-ray Absorptiometry): these scans are available at most main hospitals as they are routinely used for checking bone changes as people get older. You lay on flatbed scanner for about 20 minutes for a full body scan (head is not included though). They are not expensive (only about £70) and the results provide a breakdown of your body composition into fat, bone and muscle. Some doctors would like to see DEXA scans provided before any HIV treatment is started, and repeated annually to monitor for changes.
MRI scan (Magnetic Resonance Imaging): these scans are much less readily available and the equipment required is more sophisticated and expensive. An MRI scan provides a computer image of the tissues, muscle and bone in a cross-section of any part of your body. An MRI scan can show how fat is distributed – whether it is subcutaneous (under the skin) or visceral (around your central organs) – and is very accurate at measuring any changes.
Bio-electrical Impedance Analysis (BIA): BIA is a simple painless procedure that calculates the percentages of fat, muscle and water in the body according to height, weight, sex and age.
It has mainly been used for HIV-related wasting but may also be useful in monitoring lipodystrophy.
Weight in people with lipodystrophy is generally stable. Fat redistribution rather than weight gain or loss that is usually the issue. However, weighing yourself is important in case you have lost or gained weight without realising it.
Using combinations without nucleosides is one new strategy that is being studied. Another might be to use entry inhibitors like T-20 or maraviroc.
If you make a treatment change, test your viral load at least monthly afterwards until you can confirm that the new combination is working. If your viral load rebounds, you can always return to your previous combination immediately, so there is little to lose in at least seeing whether the lipodystrophy will improve.
It will be much easier to know if the switch has worked if you have been monitored before you make any change.
Contents. T-20 side effects. Lipodystrophy Fat loss (lipoatrophy).
This is the
web edition of the i-Base guide Avoiding & managing side effects.
This guide is available in UK clinics. You can order
free printed copies or download
a PDF version (564 Kb). There are also several translations. Decisions relating to your treatment should always be taken in consultation with your doctor. Information in this guide is intended to support those discussions
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