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 Noel, have you been on treatment before this? and how long have you been living with HIV?
After 10 hours of being on TLD the symptoms you have experienced would not occur. This type of change to your body happens after years of being on treatment and is associated more with older treatments than TLD.
Do you think you have lost weight? and what have you tried to regain the weight/shape back in your arms and legs?
I’m Sarah from Kenya also experience the same thing legs and arms and shunken chicks lam onTLD ARV drugs for 10 hrs please assist
Hi Constance, I am sorry that you are having these effects. How has your body changed? and what treatment are you taking?
I have both lipoatrophy and lipohypertrophy. I feel shy to move and lost my confidence. What can i do?
Hi Thumie, I am sorry to hear that your legs have become thin. Are you still taking Reydin? Reydin does not cause thinning so this symptom should have stopped after you switched from efavirenz.
Replacing fat on legs can be difficult after this has been caused by treatment. Have you tried muscle exercises fro your legs? Increasing the size of the muscle in your legs can help increase how big the legs are and they will not look so thin.
Is your skin still dark? More information about this can be found on this previous question: https://i-base.info/qa/807
Iv been them effevarenz since 2009 my legs become thin and switched to Reydin that was worse and my skin became very dark especially my hands and feet and very thin what can I do in that
Hi Isabella, I am really sorry to hear about your body changes. This could be a side effect called lipodystrophy. Some area gain fat and others lose it. Unfortunately there are no easy ways to reverse the changes although exercise can sometimes reduce weight.
These links have more information. You doctor should also explain this.
Lipodystrophy and metabolic changes
https://i-base.info/guides/side/lipodystrophy
Fat loss (lipoatrophy)
https://i-base.info/guides/side/fat-loss-lipoatrophy
Fat accumulation
https://i-base.info/guides/side/fat-accumulation
Exercise
https://i-base.info/guides/side/exercise-and-staying-active
I’m in arv since 2011 but now it changes my body my face are big my legs is like a man and my bum are very small Iwas speak with my doctor about this but nothing can help me I’m worried to much I can’t to wear a shorts or dress under my nees can you give me ideas about what can I do thank you
Hi Joe, Genvoya does not contain medication that causes lipodystrophy. Has anything else changed in your treatment? As you initially gained weight while on Genvoya it further suggests that this is not the cause.
Unfortunately older medication are known to cause lipodystrophy and often this can be hard to correct. How much weight have you lost? While switching drugs can sometimes help, and in your case did so for a while, regaining the lost weight from HIV treatment can be difficult and sometimes impossible. Where do you live? In the UK you can access NewFill – this is an injectable treatment used for fat loss in the face specifically caused by HIV medication.
This is a link with further information: https://i-base.info/guides/side/fat-loss-lipoatrophy
I have taken ARVs for 10 years, genvoya for past 5 years. I ever had AZT drugs for 2 weeks and PI drugs for 2 years . Since then , I keep feeling my face, butt, arms and legs are losing fat. When switching to genvoya , for the first 2 years I did gain some weight , but now lipoatrophy still continues . I guess ftc ingredient of genvoya is the reason making my body look thinner each day.
Have tried to switch to JULUCA ,but it’s other side effect didn’t work out for me . Any advise ?