Question
I have been losing weight while on ARVs, is there anything I can do?
4 April 2022. Related: All topics, Living with HIV long-term, Side effects.
Hi I’m Sheila, I’ve been on ARVs for 12 years now but I am truly depressed of the the way I’m losing body fat. I don’t want to look at myself in the mirror. Is there any other medicine I can use just to help me gain weight?
Answer
Hi Sheila, I am sorry to hear how depressed you are feeling. Have you been able to speak with anyone about this?
Have you been taking ARVs since you were diagnosed 12 years ago? and what combination are you taking? Some combinations of HIV medications have greater impacts on weight that others
Where have you lost weight from? Regaining weight can be difficult and unfortunately can take a while – just like it takes a while to lose the weight.
There are no medications to replace this lost weight, however that does not mean there are not things you can try.
Losing weight in the legs and arms, people can find success in building muscle where they have lost fat. If it is a generalised loss of weight have you increased how much food you are eating?
There are a number of factors that affect your weight, not all related to HIV. If you are stressed, very active, eating a little and even genetics can all influence your weight. If you are looking to increase how much food you are eating I have attached a guide to the i-base healthy lifestyle guide.
More specific sites of weight loss, namely the face can be read about here. While there are no medications, injections are available to recover lost definition in the face if this would be suitable for you.
Josh.
Hi Joseph, it is unfortunate that in this case that there is nothing further your doctor has suggested. I know I have mentioned previously about blood glucose and cortisol levels but have any further investigations been offered to you for your weight loss? It’s important to check for other causes, especially given that your HIV medication is not a common cause for the lipodystrophy you are experiencing. This is not to say the medication is not the cause, rather for completion all other investigations should be done to ensure nothing is being missed and that the medication isn’t being ‘blamed’ for the cause.
Have you had recent CD4 and viral load testing?
HI josh, all my doctor said is to wait for new drugs which might contains different ingredients won’t cause fat loss. Since I had tried all other drugs , and Ingredients in injection drugs is similar with ingredient I took caused serious side effect before, so only hope is to wait for another 4-5 year for next generation drug.
Actually ,my doctor at first tried to convince me it’s not fat loss. Said he rarely see fat loss occurred in people taking new drugs . And fat doesn’t just disappear, usually transfer from one area to another area in body. When I showed him pic over these years , he admitted I do get thinner than before .Although he doesn’t come out any proposal to stop this problem, he is willing to let me try different drugs , which I felt thankful.
As you said, fat loss is a slow process. Over these years , I noticed fat loss occurring on face , but this year I start noticing hand , feet, butt also have same problem. Tried to convince myself new drug like genvoya shouldn’t have this issue, but truth is it’s happening.You may think
It’s unlikely to notice daily change in fat loss, but I do tell my whole body is getting thinner every morning and confirm fat loss more when comparing pic now with pic took before .
It’s not emotional issue needed to address for , more like a fact but need scientific explanations.
My doctor can’t explain why. And I do know very very few people taking new drugs like genvoya have same problem as me.
By the way, there is no abnormality in my blood glucose , nor in cortisol levels.
Hi Joseph, has your doctor suggested any other methods of managing this weight loss?
Thank you for sharing this link. It is unfortunate that the rates of lipodystrophy is not known. This often leads to the managing of the side effect being more difficult is the reason for the symptom is not reported. Have you had any further testing that would fit with these symptoms e.g., blood glucose monitoring and cortisol levels?
You should not be feeling fat loss so soon after taking a tablet. A side effect impacting fat tissue would not be that apparent. Fat loss is more slow and difficult to notice. Have you considered any psychological input for addressing this ‘feeling of fat loss in the morning’? This is not to say that your face is thinning, but rather to manage the idea of apparent immediate lipodystrophy.
Hi josh , thanks for reply.
Actually my weight donesnt change much even when I took azt and pi medicine . Just can feel the fat on my face looked thinner. And the situation continues even when I change to other drugs. Now I am on genvoya for 5 years already. I usually took genvoya at 8pm , the next morning , I can feel fat on my legs , hands, butts, and face is getting thinner . I now drink 2 times protein drink a week . It do help a bit prevent the fat loss problem worsening. Sometimes I also take UC-II supplements, which somehow I found also help a bit keep fat loss problem worsening.
It’s quite obvious that days I don’t take genvoya, I don’t feel fat loss when getting up in the morning.
https://www.drugs.com/sfx/genvoya-side-effects.html
Content as below at this url might explain a bit .
Redistribution/accumulation of body fat (including central obesity, dorsocervical fat enlargement, peripheral wasting, facial wasting, breast enlargement, “cushingoid appearance”), increased glucose levels[
I don’t have other healthy issue which might effect weight or make fat thinner or take other supplements beside of proteins and UC-II .
I am 45 years old . I know aging might be a factor to affect fat, but I just can’t figure out what’s the cause make me fat thinner each day , especially in the morning beside of ART drugs.
Hi Joseph, Genoyva and Biktarvy contain the same dosage of FTC – 200mg. In this case it would be expected that you’d experience the same level of weight loss while on either treatment if FTC was/is the cause.
FTC is not known to cause weight loss. It has possibly been suggested to lead to weight gain but there is not sufficient evidence to support this.
As you have mentioned you did use AZT and PI which are known to cause weight loss/lipodystrophy. Do you have a number record of how much weight you have lost and over what time period? and have you noticed any other symptoms in yourself apart from these fat changes?
As for the protein drink do you mean you notice an increase in weight for a few days after? are you doing anything else for your weight a apart from the protein drinks?
Josh,Thanks for the reply earlier. As I said in previous comment( don’t know why it disappeared,maybe due to the website site error occurred earlier) , I am from Taiwan . Actually I have discussed with my doctor about fat loss issue for many times . And that’s why he allow me to try different ART drugs. My doctor said Genvoya ( the current drug I am taking ) , consisting of ftc and taf. Ftc do have side effect of fat loss , however its occur rate is very low . Taf ,its metabolism rate inside body is very fast which is not that possible to cause fat loss. But my personal experience is when I changed genvoya to biktarvy , I did feel fat loss get more obvious . And biktarvy holds twice amount of taf than genvoya.
So my guess is either ftc or taf or both cause my fat loss problem. The occur rate supposed to be low, but somehow it happens to me . I have record of my pic for all the past years, it’s very obvious to see the difference fat loss occurs on my face , hand, legs and butts, even though my weight doesn’t change that much for these years.
I had tried to switch to biktarvy, juluca,dovato already. All failed due to uncomfortable side effects. So guess the only way to deal with this issue is continuing drinking protein drink (which usually only have 1 or 2 day effect on gaining some fat ), and maybe do sculptra injection in the future .
Hi Lungi, the combination of medication you take does not cause weight loss – dolutegravir is associated with weight gain. How much weight have you lost over the last 5 months?
Hi I have been on arvs for 5 months I take acriptega( tenofovir disoproxil fumarate,lamivudine,dolutegravir) and I am losing weight (whole body) what can I do to gain weight again. I am on healthy diet , I do some light exercises and I am able to eat larger meals 3 times a day.
Hi Joseph, I am sorry to hear you have been struggling with your weight for so long. Have you had any support from health professionals/friends & family?
Can you please explain how you feel the weight loss situation get worse so soon after taking Genvoya? Of the drugs that are contained within Genovoya, the only one partially linked to weight loss is TAF. The effects that TAF has on weight loss is much less than TDF and others linked to weight loss including: stavudine, zidovudine and efavirenz.
Have you kept a record of how your weight has changed since being on ART?
Unfortunately you are right about the older drugs having permanent effects. This is a problem that many people deal with who were on older combinations of ART. Regaining fat in the face is often a challenge. Please follow this link for more information: https://i-base.info/guides/side/fat-loss-lipoatrophy
For other areas of the body, some people find building muscle in those areas of lost fat can help rebuild what the body looks like. Though I can understand that this may be a challenge.
As for the study you have mentioned, this needs to be taken with caution. The study only focusses on drug combinations with long half lives, namely efavirenz, emtricitabine and TDF. None of these being a drug included in the Genovoya combination. Long half lives mean that there is some scope to miss occasional doses but this is not the case for others. This is very true of integrase inhibitors which are only suitable for daily dosing – elvitegravir.
A further problem is that in clinical studies, viral load is monitored much more often and rebounds can be addressed. In daily living this is not the case and it gives chance for drug resistance to develop. While some of the drugs in Genoyva may have long enough half lives, dual therapy does not offer the same protection as triple and drug resistance would be sure to develop over time.
Where do you live? There may be other suitable options for your treatment depending on what your healthcare provider has access to. Have you spoken to a doctor about any other potential methods of weight gain?
I’ve been on treatment for 10years. I experienced the same fat loss issue (face , arm, limb, butt). I am 178cm/74kg, but my appearance looks skinny due to the fat loss. Guess it’s because I ever took AZT drugs for a month and PI drugs treatment for the first 2 years.
Even switching to drugs including FTC/TDF later on , now on Genvoya (including FTC/TAF) for 5 years already. Still can feel fat loss continues everyday. I tried to switch to JULUCA , but failed due to its serious side effect. Also tried Biktarvy , but still feel uncomfortable for its side effect and feel fat loss situation is worse than Genvoya.I know drugs I took for the first 2 years cause permanent damage to my fat cell, but I don’t understand why the situation still continue even stopping those drugs many years ago . Does TAF ingredients affect metabolism? Everyday, couple of hours after I take Genvoya , can feel fat loss situation get worse. And this situation doesn’t happen on days I don’t take genvoya. Now the only solution I can think of is to decrease the freguency of taking genvoya (like 5 days on 2 days off ). A study show this drug taking pattern can still suppress virus effectively.(https://www.aidsmap.com/news/mar-2021/four-days-three-days-treatment-regimen-still-looks-effective-after-two-years). And drinking protein shake once or twice a week to help gain some weight hopefully.