Can wasting be reversed?

[Mendicant]

Hi all, I have a unique health issue that I wanted to get people's opinion on.

While the meds are doing a great job, (Dolutegravir-Darunavir/Ritonavir-Tenofovir) and I have become undetectable, I'm faced with an uncommon issue where I have lost all muscle and fat from my arms and legs. This has affected my self-image in more ways than one.

This makes me look like a classic aids poster boy.

Is it possible to reverse this look. I have been trying to eat as healthy as possible. Could steroids help in this situation? If so, what kind? I need muscle and fat fast else I think I'll simply keep on growing thinner.

[Jim Allen]

Lipodystrophy issues would be rare with today's meds, its really an issue of the past ARV's not current and as for wasting it is reversible to a point but it also highly depends on the root cause.

You would need to work with your doctor to check for any underlying issues and also to rule out just aging.

Anyhow wish you well.

Jim

PS
This has a section on wasting and list of "possible" causes and things to check, might not be an answer but a start.


https://www.poz.com/basics/hiv-basics/changes-face-body-lipodystrophy-wasting

[leatherman]

I have a unique health issue that I wanted to get people's opinion on.

I'm faced with an uncommon issue where I have lost all muscle and fat from my arms and legs.

This makes me look like a classic aids poster boy.

your situation really isn't all that unique or uncommon.

Looking at your previous posts, I see that by the time you went back onto meds (dec 2017) you had AIDS again, not to mention a lot of other problems too (thrush, TB, fevers, loss of appetite, hospitalization). In January (just barely 2 months ago) you were just out of the hospital and talking about your loss of appetite.

not to be rude, but you might look like the classic aids poster boy, because you are the classic aids poster boy. Don't get mad at me for saying that because I too was an aids poster boy too for quite some time (from about 1994 to 2000. I was really sick for quite a long time because of the issues I had with the early HIV meds). It took you a number of years to get this sick and, even with meds, it is going to take time to recover from all that's happened to you.

I have been trying to eat as healthy as possible.

since steroids don't help with a weight loss problem, might I suggest you simply stop eating so healthy. when I was recovering from AIDS, thrush, wasting, PCP, etc. (weight down to 100 lbs from my normal 145 lbs), my doctors suggested milkshakes, ice cream, cake, protein shakes, Ensure, etc. Being sick burns a lot of fat and muscle. Recovery takes a lot of eating to replace what you've lost and to give your body the material it needs to rebuild

I was left scratching my head as I had read on many sites that a loss of 50-100 is the norm. Apparently not if you are on meds, it just spirals out of of control immediately.

One more personal note. During the early years of HIV meds, I had lots of issues. So many that twice I stopped taking meds. Each time, within about 3 months I was back to an AIDS condition and back in the hospital with an OI within 5 months. While some people who stop meds may go for a while without health issues, many people quickly develop AIDS again. Stopping meds doesn't result in a small drop in cd4s or a slight increase in VL. Stopping meds results in losing lots of cd4s, a quickly increasing viral load, and eventually AIDS. (btw taking meds every other day can easily let HIV become resistant to the meds, resulting in the race down to AIDS again)

So, as someone who, like you, stopped meds and developed AIDS again, all I can say is that I hope you take this lesson to heart. Haphazard adherence or no adherence to daily HIV meds isn't playing russian roulette, it's just a straight path to being sick again. While the damage isn't cumulative, becoming ill with AIDS several times can leave some long term issues - your immune system may not recover very much and you may always be more likely to have health issues. If you ever feel like stopping meds again make sure to talk to someone (your doctor, a peer, a counselor) who might be able to encourage you to stick to your daily regimen.

Best wishes during your recovery!

[Mightysure]

I think this is something I'd seek medical advice on. Your body took a beating when you stopped your medication, so there may be some things that are reversible, like building up fat, but I'm not sure about muscle tone.

I would see what a medical professional has to say about any of that.

[leatherman]

so there may be some things that are reversible, like building up fat, but I'm not sure about muscle tone.

since the OP's problem is based from being sick with AIDS and not an issue of fat loss/redistribution from older meds, of course this is reversible.

I nearly died of aids several times and had wasted away nearly 50 lbs. 25 yrs later, I am a very health 56 yr old at 150 lbs, going to the gym every day, in better shape than I ever was in my 30 and 40s (my "aids years"). The OP can recover too. It just takes take and effort.

[em]

Can it be reversed

I may not be a health fanatic by any means

I was a while ago a bag of bones in the mid nineties I was about a hundred and ten pounds . muscle wasting and for me my lymph nodes in my neck where the size of golf balls and the ones down below where the size of baseballs. Now they are the size of large marbles my guess scar tissue from being so stretched out. the muscle loss well I am lazy and overweight now. with high sugar levels do to high sugar intake and one kidney I lost one do to stones they biopsied one and it was from the medication I was taking they tell me.

My neck is now huge and my gut well it is a bit embarrassing. but it is my fault form over indulging. I am five foot eight and two twenty pounds. Not a AIDS poster boy but a poster boy for over indulging and not doing adequate  exercise.

the wasting look is not a problem at my weight. May not be the answer you are looking for. Or the look you might be going for but thought worth sharing

THis is a moment I will never forget about that time long ago. I awoke in the VA hospital in the middle of the night to find this guy standing over me with a syringe he had stuck into the lymph gland in my leg. He was filling it with fluid to take a sample I am guessing to find out what my body was doing to combat the virus that was running rampant in my body. that is only my guess. like the glans did not hurt enough on their own having a large needle stuck in one in the middle of the night. I will never forget that rude awakening. why he found the need to take a sample in the middle of the night ?

long ago and should stay there

the topic was wasting sorry to bring up an off post thought about something not related just thought there are worse things then how we look. I hope this scarey  memory I was very skinny and was sick from AIDS it is tied in that way.

to me it is funny now over twenty years later

 

 

[Mendicant]

Thank you all for your replies.

From what I could gather from your post leatherman, this condition can be reversed over time. Thank you.

Because this happened shortly after I started the meds and I had pretty healthy weight for my body size before, I can only attribute the cause to be meds and no other underlying condition.

[Jim Allen]

Sorry do you really truly believe yourself?

I've said it before and ill say it again there is a trend with you from your posts of you looking to blame your HIV meds for illness now and historically that lead you to this situation.

You stopped treatment without any good reason and started counting CD4 cells like it means anything leading you back to AIDS.

You have only been on this HIV treatment for a brief few months. No you can't recover fully in a few months after what you put your body through.

You got sick had AIDS and you did not correctly treat for 9 full months candidiasis until it became  "invasive" esophageal candidiasis, you had TB, fevers, loss of appetite  , hospitalization and a whole list of medical issues resulting in hospitalization, treatment and and only just got out of hospital after being pumped full with antibiotics and anti-fungal meds ...

All this and yet you think there is no underlying issue for wight-loss? and that the issues are due to the HIV meds really?

Kid yourself all you want but I'm not buying it.  I wish you well on the road to recovery, your body has been through a lot recently and needs time and care to heal.   

Jim

https://forums.poz.com/index.php?topic=68303.msg

[leatherman]

From what I could gather from your post leatherman, this condition can be reversed over time. Thank you.

of course it can be reversed; however, it'll take time and it'll take you eating more

You got sick had AIDS and you did not correctly treat for 9 full months candidiasis until it became  "invasive" esophageal candidiasis, you had TB, fevers, loss of appetite  , hospitalization and a whole list of medical issues resulting in hospitalization, treatment and and only just got out of hospital after being pumped full with antibiotics and anti-fungal meds ...

All this and yet you think there is no underlying issue for wight-loss? and that the issues are due to the HIV meds really?

Because this happened shortly after I started the meds and I had pretty healthy weight for my body size before, I can only attribute the cause to be meds and no other underlying condition.

fevers, TB, esophageal candidiasis, hospitalization, fatigue, loss of appetite - for the most part, these are the side effects of having AIDS. Each one of these things certainly had an effect on your weight as your body battled these issues and each of these things certainly impacted your appetite and amount of food intake. I have to agree with Jim that all of those are the underlying cause to your weight loss.

As i mentioned before, I've been in a similar situation to yours. The esophageal candidiasis (the dreaded thrush! mine was really bad too and quite "invasive") was the worst. I'm certain that if you think about it, you'll see that some of your weight loss has to be attributed to eating less while dealing with the thrush. You probably just didn't notice you were losing this much weight until it was bad...which was the same time as you started meds. Your meds didn't cause the weight loss (that's just a false causality assumption), as much as the weight loss is just one of things in a long list of problems you have experienced because you had advanced HIV and are just starting to recover.

Your health took a massive hit. Meds stop HIV from replicating; meds don't "heal" any side effects of being that sick. (my esophageal candidiasis left scar tissue in my throat that still adversely affects me, either though I consider myself to be very healthy these days) It just takes time, adherence to meds, exercise and healthy eating.... well not totally healthy eating. If you had a big drop in weight, you'll need to eat more to rebuild your body. More protein, more fat. Just don't over do it. Exercise can help you gain weight without just getting fat.

Hang in there. Your body went through a lot being sick, and will probably go through a lot recovering. Your meds are doing their job. your immune system is back to doing it's job. Now your job is take care of your body with meds, exercise and a good diet. If things keep improving for you, by summer, all of this will be just a bad experience you can tell tales about.

[Old1mind]

I am experiencing something similar.
I was on Combovir and Kaletra for 6 years and the only 2 things I cared about were the viral load and my cd4, until I realized that my legs and arms were getting skinnier and at the same time I was cumulating fat on my chest and stomach and no matter how much I exercise or ear healthy, my body just wouldn't change.  After moving from Brazil to Florida (legally) the doctor here switched me to Triumeq and I was so happy, mostly because I was only taking 1 pill a day, no major problems and the best part, no stomach problems. Spent a whole year on Triumeq and no problems, undetectable and cd4 450ish. Switched to Genvoya and surprisedly, my CD4 that has always been between 300-500, is now 760 on my first exam after switching. I don't feel any different though. I feel ashamed of going out because of my skinny legs and arms, my veins showing, it is just painful. I eat a lot of fruits and vegetables, drink a lot of water and exercise at least 3 times a week but the situations just doesn't change, still losing fat on arms and legs and gaining on my chest and stomach. Have been searching for HGH to talk to my doctor but I don't even know if this is the best alternative. All I know is the way I look it is consuming me and starting to affect my social life.
Sorry for the long text, just starting to post on this site, it has been very helpful for some of my questions. 

[Jim Allen]

So I really don't see the similarity at all?

The OP did not treat his HIV for a few years on some "break" and allowed OI's to take affect and then instead of treating the OI's he than allowed them to run their course until it nearly killed him and landed his backside literally in Hospital with horrific issues + a dose of AIDS and yet somehow he think just 2 months of HIV meds is his issue.

 

[leatherman]

. . . the only 2 things I cared about were the viral load and my cd4
. . .
Switched to Genvoya and surprisedly, my CD4 that has always been between 300-500, is now 760 on my first exam after switching. I don't feel any different though.

while I can certainly understand worrying about cd4 counts (especially in the first yrs after diagnosis and/or when they are below 200), the cd4 count is not a measure of "healthiness". It's simply a quantity measure of one part of your immune system. It doesn't measure the "strength" or effectiveness (quality) of cd4s either. The general consensus is that more cd4s usually means a better immune response, and therefore a patient should be "healthier" or "feel better". However, more doesn't always mean better, so there are some people with low cd4s who are "healthy" and some people with high cd4s who are "sickly".

Going from 500 to 700 doesn't mean you should feel any different. It only means that you have more cd4s and your body "should" fend out illness better. Your immune system doesn't make you feel good or bad, your immune system simply fends off diseases. Instead of thinking that you should feel different with a higher cd4, you need to reflect on how "un-sick" you are and how that makes you feel "healthier" - because that's your immune system working.

[DavidinCA92284]

Lipodystrophy issues would be rare with today's meds, its really an issue of the past ARV's not current and as for wasting it is reversible to a point but it also highly depends on the root cause.

You would need to work with your doctor to check for any underlying issues and also to rule out just aging.

Anyhow wish you well.

Jim

PS

This has a section on wasting and list of "possible" causes and things to check, might not be an answer but a start.


https://www.poz.com/basics/hiv-basics/changes-face-body-lipodystrophy-wasting

I just wanted to write to say that I've been a LTS (30 years) with Lipoatrophy . . . and while the HAART meds have contributed to the condition, in addition to just having AIDS . . . the situation of loss of body fat to the Butt and Face have NOT reversed to a 'normal' state of being.  As a matter of fact, it hasn't returned to any noticeable level of improvement even being on Meds that supposedly don't cause Lipo issues.    For Jim to suggest that it is a thing of the past kind of is a slap in the face of all the Long Term Survivors still dealing with the issues of medications.    Doctors have suggested that the impacts of Lipo inducing drugs after stopping them may continue indefinately - they just didn't know then AND don't know now.   So to answer the OP . . . depending upon what kind of "wasting" he has or had . . .if it is of the lipodistrophy or should I say atrophy variety . . it may never come back.

Three also should be distinction between Lipodistrophy and lipoathrophy (which might be discussed in Poz's Lipo section) . . . the former being the displacement or changing of fat of the body from one location to another versus the latter being the loss of body fat from various parts of the body like the legs, butt, and face.    Wasting on the other hand may or may not be of either Lipo variety; whereas it can be just because one's diet isn't adequate not necearily because of medications.

[Jim Allen]

So I really don't see the similarity at all?

The OP did not treat his HIV for a few years on some "break" and allowed OI's to take affect and then instead of treating the OI's he than allowed them to run their course until it nearly killed him and landed his backside literally in Hospital with horrific issues + a dose of AIDS and yet somehow he think just 2 months of HIV meds is his issue.

Lipodystrophy issues would be rare with today's meds, its really an issue of the past ARV's not current and as for wasting it is reversible to a point but it also highly depends on the root cause

.

The context of this thread and my comment to the OP issue is not LTS, or having taken older treatment meds etc, its rare for newbies today to develop this concern from more modern meds.

For Jim to suggest that it is a thing of the past kind of is a slap in the face of all the Long Term Survivors still dealing with the issues of medications.

I did not say or suggest the issue is the past, or LTS issues are the past or people suffering with this is the past.

The OP stopped his treatment, used "natural treatment" for OIs etc so ended up landing his backside in hospital dying from OI's for months with a doze of TB to help and not eating, and so started to loose weight before restarting modern meds and yet blamed them within 8 weeks for his issues ...

LTS certainly do I respect face far more commonly concerns newbies simply do not have to face or at least not in the same degree and I did not suggest otherwise nor would I.

I believed I was very clear about the context, the OP situation over the threads, his modern treatment vs  treatment options widely used in the past.

Sorry to hear that its offensive to you somehow or you feel the need to post about issues the OP does not have in his thread or at least not from the same reasons your posting about

That said i'm not going to change my position on this or appologize on this topic towards the OP or generally regarding newbies starting treatment with modern treatment options.

Jim

[CaveyUK]

Yeah, this thread is full of misunderstandings and people talking at cross-purposes.

The OP had experienced a degree of wasting most likely due to underlying conditions and his body recovering from the stress it had been through whilst NOT taking HIV medication.

Jim quite rightly pointed out that modern meds are not known for lipo, unlike the older drugs, and it was noted that the OP's situation should be reversible over time.

DavidinCA's point relates to older med-induced lipo, which isn't necessarily reversible, but also wasn't the subject of the original post, nor Jim's response!

I think all of us can sympathise 100% with LTS' and the issues they dealt with in the early days of HIV meds. I see no slaps in faces going on here....

[harleymc]

I'm pretty old school and don't see any slaps in the face.

I also don't self define as an LTS, I'm a pioneer and a trailblazer.

[CanadianExpat1983]

Hi all, I have a unique health issue that I wanted to get people's opinion on.

While the meds are doing a great job, (Dolutegravir-Darunavir/Ritonavir-Tenofovir) and I have become undetectable, I'm faced with an uncommon issue where I have lost all muscle and fat from my arms and legs. This has affected my self-image in more ways than one.

This makes me look like a classic aids poster boy.

Is it possible to reverse this look. I have been trying to eat as healthy as possible. Could steroids help in this situation? If so, what kind? I need muscle and fat fast else I think I'll simply keep on growing thinner.

Ritonavir is a PI, has higher likelihood of causing lipodystrophy than the 1st line of treatment offered today. Therefore no PI's is in the first line of treatment combo today unless you have resistance to the other classes of course. Have you consulted an ID or Endocrinologist in the meantime? What did they say?