Question
What can I do about fat loss in my arms and legs?
5 January 2016. Related: All topics, Side effects.
Please help I’m too depressed and paranoid to go out.
I am suffering from weight loss on my arms and legs. I have been on a course of testosterone and steroids but that didn’t work.
My doctor seems to have given up, what can I do? Is there a specialist I can self-refer to in London?
Answer
Thank you for your question.
The fat loss that you are describing is also called lipoatrophy. In the context of HIV, this refers to the loss of fat from the arms, legs, face and bottom.
This is only a side effect of old HIV drugs called d4T (stavudine) and AZT (zidovudine). Meds used in 2016 do not cause fat loss.
As with all side effects, the first thing to do is talk to your HIV doctor. You did not mention what treatments you are on but if you are taking either d4T or AZT, then switching to tenofovir or abacavir-based combinations can reverse limb fat loss. Efavirenz has also been linked in some studies to a greater fat loss compared to lopinavir/r.
Regaining fat from switching drugs is a slow process but it switching should stop the symptoms getting worse. Specific exercise to help build up muscles in your legs might also helpl.
Although steroids can help build muscle by they will not help replace fat – and are more likely to make the fat loss worse. Unless you were using steroids with a programme of exercise to thicken your arms and legs with increased muscle, then I am not sure why this was recommended.
Most lipoatrophy treatments are for facial fat loss, but this only works for small areas, and are not appropriate for arms and legs.
Body changes are difficult to deal with, and it is upsetting to hear the impact this has had on your life.
Do you still feel this worried if you are wearing clothes that cover your arms and legs?
Ask to speak to a health advisor for counselling. This might support you in finding other ways to deal with this. It is not good to become more isolated, as this can then affect your general health.
I wondered whether your combination include efavirenz. This is also imporatnt because you are describing mood changes and paranoia.
Please make sure your doctor understands how you feel and how these side effects are affecting your life.
A specialist lipodystrophy clinic run at St Thomas Hospital in London. used to allow self-referral. Please call the Harrison wing on 020 7188 6666 to see if this clinic is still running.
If you also have facial fat loss, NewFill (Sculptra) generates new collagen growth under the skin and this fill the gap left by the lost fat. This makes the skin grow thicker, sometimes by as much as 1 cm. NewFill is available on the NHS for facial lipoatrophy in London, Birghton, Manchester and some other cities.
For more information on all of these treatments please see this link to the i-Base guide to ‘Avoiding and Managing Side Effects’ .
If you want to change HIV clinics to access these services then you can either ask for a referral from your current HIV doctor or call one of the larger centers such as the Kobler Centre at Chelsea and Westminster Hospital and register with them.
This answer was updated in January 2016 from a question first posted on 10 June 2010.
Hi Luvuyo,
Weight loss isn’t something that’s common with modern day ARVs. Weight loss can also be due to a number of things, one of which is stress.
hi I’m also loosing fat from arms and legs but also I can keep weight in general and I’m loosing confidence and I have low self-esteem I’m always stressed
Dear Violet,
I’m sorry to hear this because zidovudine (AZT) and stavudine (d4T) can cause fat loss. Here is the page on fat loss from the i-Base guide to side effects. Can you show this to your doctor to make them change your meds?
If you live in South Africa you can contact the Treatment Action Campaign (TAC). TAC is the leading civil society force behind comprehensive health care services for people living with HIV&AIDS in South Africa. Founded in 1998 TAC has more than 16,000 members and 267 branches.
I have been on lamivodine, zidovodine and stivodine for 6 years and i experienced that am loosing weight in the bottoms and the legs my doctor refused to change my meds , what should I do I really need help am 25 Years please help
Hi Nkosi, what does your doctor say about each of these symptoms? Tribuss is usually a very good treatment and these symptoms are not common side effects. The increase in weight might not be any better with a different combination. Has your doctor looked at your diet and exercise programme? How high are your triglycerides? There are usually several ways to mange this. Ai-Base is in the UK so we don;t know options in every country. However, a new drug called dolutegravir should become available in SA perhaps this year, and asking your doctor about this might be good. The new drug combination is expected to be the same price as Tribuss which will make it easier for people to change.
Hi Simon
My trygliceride level is too high and I’m gaining fats around my face and stomach and I’m on Tribuss treatment. What can I do to stop this fat gain or which treatment can I ask my doctor to change me into in South Africa?
What is the best medication or treatment available in South Africa with less side effects?
Hi Nokulunga, there is a lot of research into an HIV cure, but this is likely to be a long time away. It is good to be optimistic, but it is a difficult thing to find.
Modern HIV meds don;t usually cause fat loss from your arms and legs unless your combination includes d4T (stavudine) or AZT (zidovudine). If your combination uses these drugs (more rare now) it is better to change to newer drugs. Have you already lost fat or is this something you are just worried about?
is there any promise of findinding medication to completely kill the virus, especially for babies born with HIV.
What should I eat to maintain my fat from arms and legs when on FDC.
Hi Nona. Fat loss is more linked to zidovudine and so changing to another drug would be better. Most people change for zidovudine to tenofovir DF. Even if the lipodystrophy does not get better, changing treatment might stop it getting any worse. Also, your combination should include three drugs.
Is there a third drug that you didn’t mention? If not, please talk to your doctor about changing to a combination with at least three drugs.
been on lamivudine/zidovudine for 12yrs which of these is causing my lypoastrophy and whats the best substitute which will stop it and cause reversal