Q and A

Question

Which HIV drugs cause lipodystrophy?

I’m not on treatment yet but I am trying to learn about it before I start.

I am very worried about lipoatrophy and lipodistrophy. Can you tell me which is the best treatment combination for not producing these side effects?

From my reading the integrase inhibitor raltegravir (Isentress) and entry inhibitor maraviroc sound like the best option. What do you think?

Answer

Hi

It is good that you are looking at treatment options before starting treatment. Although lipoatrophy was a worry oin the past, none of the drugs used in 2016 for starting treatment  have this side effect.

Lipoatrophy is the term for fat loss and lipohypertrophy is the term for fat gain.

Lipodystrophy is a term for general changes in body fat, which includes fat loss and fat accumulation. Although everyone is likely to worry about this side effect, luckily the chance that it will occur is very low.

Body changes are reported less often with all the first line combinations in UK or US treatment guidelines. So these are side affects that related to when treatment was first developed 20 years ago.

Fat loss was almost entirely related to use of d4T (stavudine) or AZT (zidovudine) – neither of which are recommended in Western countries anymore.

Fat accumulation is more complex because it has been reported with all types of combinations. Although this was first linked with early protease inhibitors, it was also reported with NNRTIs like nevirapine and efavirenz.

It seemed plausible that drugs that increased blood lipids like cholesterol and triglcerides  might also be causing fat accumulation. So when newer lipid neutral drugs like atazanavir and raltegravir were developed it was hoped they would also not cause lipodystrophy.

However, this wasn’t seen in studies. Atazanavir, even unboosted by ritonavir, didn’t show less fat distribution compared to lopinavir/ritonavir (Kaletra), for example. Similarly, the hope that integrase inhibitors might have a clean lipodystrophy profile was not seen in studies, where raltegravir was similar to efavirenz.

The mechanism behind fat accumulation has still not been explained. Luckily fat accumulation seems much less common with little difference between efavirenz, atazanavir/ritonavir, darunavir/ritonavir or raltegravir, when any of these four first-line options are used with either tenofovir/FTC or abacavir/3TC.

Although maraviroc had less of an impact on cholesterol and triglycerides compared to efavirenz, I haven’t seen any reports of the impact on lipodystrophy. Also, maraviroc is not currently licensed for first-line therapy.

This means it is probably best to pick your choice based on other properties of these drugs, in discussion with your doctor, knowing that if you get side effects you could at lest switch to alternatives.

Frist line options are listed in the i-Base introduction to combination therapy, especially in the ‘which drug, which combination‘ section.

The i-Base guide to side effects includes about 14 pages on lipodystrophy and metabolic changes.

This answer was updated in January 2016 from a question first posted on 4 September 2012.

22 comments

  1. Roy Trevelion

    Hi Thembi,
    Fat accumulation can occur in the abdomen, breasts, neck and shoulders. It can occur in both men and women. Many approaches can be used to treat fat accumulation, including diet and exercise. But you can talk to your doctor about changing your HIV meds too. Although this has been less helpful with fat accumulation than fat loss. Always check with your doctor about any interaction with a change in HIV meds and metformin.
    Please see much more info on fat accumulation in this guide to HIV and your quality of life.

  2. Thembi

    I am in South africa and on aluvia and noticed fat loss and developed buffalo hump .ive lost confidence to myself ,my thighs became small andmy upper body is big.including tummy and this buffalo hump i lost shape. Im also diabetic taking mertfomin only

  3. Henry

    Good Day to all. I read the comments and have decided to share. First off, I live in the United States if America. I was diagnosed with HIV in March of 2017 after contracting it in December 2016. Since then I have been using Genvoya to keep my viral load suppressed and I’m grateful to say I’m living undetectable. I just started experiencing lipodystrophy two months ago. Literally from 172lbs now 165lbs. Geesh! I was worried about the physical changes until I realized that it’s not such a bad thing to loose the fat. I have been in the gym building nothing but MAJOR muscle, securing my happiness. Being content in something greater that I. “When life deals you lemons, make lemonade.”

  4. Roy Trevelion

    Hi Tanky, It’s always a good idea to ask for a second opinion if you think you’re getting side effects. But arthritis is not a usually reported side effect of Genvoya. Also, modern HIV drugs (ARVs) such as Genvoya are not generally linked to fat changes on the body. You can tell the doctors that you think it’s Genvoya, and then ask them to try to find out what’s causing these symptoms.

  5. Tanky

    Well still no cure and the new HIV medication genvoya I have been more sick but my cd4 is up to 441. I have told my HIV doctor about all the symptoms and she just tells me her other patients don’t have them symptoms. Now I have noticed that my right leg that has arthritis in it, on the thigh in front looks like fat build up and on the side it looks sunk in since I have started genvoya. So my doctor tells me that its normal and her other patients don’t have it. It is not the first hiv doctor I had to change and I will do it again.

  6. Guillermo

    Let me tell u people in 2009 I was placed on haart regime of norvir, prezista, intellence and isentress. Within the first year the fat started coming out of my face and got worse each year, then bout 2014 the fat redistribution began I developed huge breasts. This year I’m getting more fat on my stomach. My Dr I had refused to change meds because my numbers were very good. We’ll I changed Drs and am now on genvoya, so hoping for this to stop.

  7. Simon Collins

    Hi Lindie, I am sorry that side effects have had such a big impact on your life. Is this fat loss or weight gain? Without more details it is difficult to comment on links with individual drugs.

    In general, the HIV meds that used to cause fat loss are no longer used. Other body changes are more difficult, but also are less common with modern meds. Also, because I don;t know which country you live in, it is difficult to comment on when and why these drugs were used. The earliest drugs were used before the side effects were known about. Even later though, in some countries the older drugs were used for longer, because of cost. In both cases though, even with side effects, the meds will have kept you alive.

    Again, I don’t know about your own situation, but it is a shame to let other people’s prejudice and ignorance affect the quality of your life. Sometimes being proud about your experiences can be a good way to fight back. Do you know other HIV positive groups or organisations that make it easier to meet other people who have similar experiences?

  8. LINDIE

    Hi I – base

    I started the treatment in 2007 July, and after 2 years the changes in my body started and I reported the matter to my doctor, the clinic first test my blood, thereafter change the medication. In 2014 changes come back and reported again and the answer I received was this new treatment is the best. I have low self esteem, no confidence at all, I don’t even buy clothes anymore accept shoes, am easily identified that am hiv positive, because of the damage the treatment has done in body, I avoid going to places where people knows me, I prefer to going to far places were am not known, which is really really SAD for me as I don’t enjoy myself. The treatment has brought back the “STIGMA” WHY is the treatment still available for use, am wondering how many people are feeling like me.

    Thank you

  9. Lisa Thorley

    Hi sibongile,

    At the moment there is no cure for HIV. And even if many people are working on cure research, a cure is still someway off.
    You mention that you have been using traditional meds for you HIV. Even if as you say you feel well, traditional meds cannot help your HIV. Therefore, its good to hear that you will be starting ARVs. For information about starting ARVs please see:

    http://i-base.info/guides/starting

  10. sibongile

    I’m positive and I’m using traditional meds, I don’t want to lie for 4years. I have been using these meds nothing is wrong with me. But today I’m starting treatment cause I heard that there’s going to be a good treatment like a cure in 2018.

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