POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Thinkahead55 on March 24, 2012, 10:44:35 pm
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After 28 years positive and a pretty severe case of lipodystrophy that started in 2000, I have come to the conclusion that that to put on significant weight is almost impossible. The only place that I have any fat is around the belly button area and the boobs, and it is a very small amount. I work out a decent amount and generally eat pretty healthy, but still consume far more calories than I did when I was 25 just to keep my weight constant. It has been this way now for the last five years or more. My question is could I ever put on weight again in any other area other than my belly and boobs. I have a feeling the answer is no and that the long term affect of the severe lipodystrophy is to remove the fat cells themselves or prevent them from being able to put on additional fat. I mean my weight doesn't vary by 1 pound either way in an entire year. Has anyone with relatively severe lipodystrophy ever put weight on again in those areas where they have had it? The implication is that I have a feeling that this lipodystrophy is permanent and irreversible. This in some ways can be a good thing to not gain weight easily, but obviously there all the negatives for life. This is really just a curious question as to others experience.
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I wound up with lipoatrophy in my face, arms and legs (and butt) and lipohypertrophy in the gut and back (buffalo hump).
I don't know that I would call it severe, but my hump is big enough that I cannot lay on a flat surface without my neck being extended forward and my head leaning back. (Rather like the way we used to be trained to perform CPR.) I also have the chipmunk cheeks and a neck that resembles a goiter.
Anyway, it ain't going anywhere.
My legs are still skinny, as are my arms, and the hump and gut are there despite exercise, diet, you name it.
I have heard of people making slow recoveries from lipo, but for the most part, we seem to be stuck with it indefinitely.
I think the best we can do is to try to stay healthy and active and not worry about how we look.
I know that is easier said than done, but I try.
HUGS,
Mark
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Have you discussed with your doctor this issue? Maybe the new drug Egrifta will help with you Lipo.
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Thinahead, I have lipo though perhaps not as severe as you, and have had it since ~1998/9 so similar time period. Of course, I am no longer on the meds that caused any of this. Lipo is a metabolic dysfunction/syndrome and doesn't reverse, or if so very, very little, over time. I also had HIV-related wasting at the same time, which is different/separate from lipo and I did indeed gain my base level weight back but it all went to my torso area for the most part. So therefore something like a plump buttock area never returned.
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Have you discussed with your doctor this issue? Maybe the new drug Egrifta will help with you Lipo.
Mikey:
Just a reminder -- this particular forum is for long-term survivors. To learn more about what this means for our forums members, click here (http://forums.poz.com/index.php?topic=11166.0).
Tim Horn
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I totally get it and accept it. I don't like the downsides but try to look for upsides of a completely unnatural condition. Yes, I have it in the face pretty good, but it has not affected my chosen career. Yes, I can't walk on the wood floors in my house for longer than about 5 min without sandals, but I have still run a marathon (bruised feet be damn). Yes, I sink like a rock when I swim, but that is why I do triathlons because it makes me lighter on the bike and run. Yes, I hate sitting on bleachers at games...um, can't think of a positive there:)
Anyway, I have read a lot about medicines that one day may help, but I have a thesis that in cases like mine, they are irreversible. The body has been changed irreversibly, which I find quite interesting. My guess is that future medicines will only help those that may start having it. Not, those that have it like I do. It appears to me that the body lacks the ability to any longer build significant fat in those areas. Thus I was just curious if others could prove my thesis wrong.
I was lucky I have not had any of the hump issues, that was always a real worry of mine. But, I still have a chance at developing it, so who knows. I have quite it quite severly in face, arms, legs, feet. Heck, I even have a four pack above the fat around my belly button. But, I workout quite a lot and have a lot of muscle also, so people actually typically think I am some sort of pyscho athlete, which isn't the worst thing. I almost did something about the facial stuff a few years ago, or at least thought about it. But, it didn't seem to make sense to have a full face and everything else be abnormal. Also, I have come to like it as a badge of honor. A badge that only I know what it took to achieve. I also like the idea that one day when I have made enough money to retire and come clean. My friends will laugh at themselves for not suspecting something like this. It is like a tattoo, but nobody knows what they are looking at except for my immediately family. When people say my son looks like me, I don't explain that in fact he doesn't. He really looks like my wife, because the body that I walk around with is not my genetic body. On the other side, someday I will need to explain to my daughter that she looks daddy is supposed to look. This is all a different discussion topic, but I digress.
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I have pretty severe lipatrophy and some lipodystophy and have had some decent results with Serostim (Human Growth Hormone). I also take a very high dose of Angrogel. I've been on it (Serostim) for about 10 years. It didn't do much to reverse the damage already done before starting it (I have still have sunken cheeks and not much of an ass), but it definitely halted the progression.
It's ridiculously expensive (luckily my insurance pays for it) and comes with side effects like aching joints and muscles. I'm on disability now and covered on Cobra till next year. I'm not sure what will happen when I go on Medicare. Does anyone have any insight on that?
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I have pretty severe lipatrophy and some lipodystophy and have had some decent results with Serostim (Human Growth Hormone). I also take a very high dose of Angrogel. I've been on it (Serostim) for about 10 years. It didn't do much to reverse the damage already done before starting it (I have still have sunken cheeks and not much of an ass), but it definitely halted the progression.
It's ridiculously expensive (luckily my insurance pays for it) and comes with side effects like aching joints and muscles. I'm on disability now and covered on Cobra till next year. I'm not sure what will happen when I go on Medicare. Does anyone have any insight on that?
I am not sure. Medicare will cover some things I didn't expect, as someone here mentioned it is covering their Egrifta.
But, what I would do is go on line to the Medicare web site and look into the Part D plans. Part D is the part of Medicare that covers medications. You can actually look by zip code for plans available in your area. Once you pick two or three, you can compare them.
You can customize it with your meds, so you can see whether the plans cover it. It will also let you know if there is a seprarate premium, which some do have.
If your income is low enough for you to qualify for low-incoime subsidy through Social Security, you should be OK. Their copays are quite low.
But, if you make too much from SSDI, or retirement, depending on your age, you could be exposed to the infamous donut hole, which could cost you plenty.
I would check all this out way in advance, so you can make plans or changes as you need to. If you have an ASO, I would contact your case manager to see what he or she says.
In some states, including mine, there is a seperate type of insurance you can get in place of a Part D plan that would allow yout avoid the donut hole if you don't qualify for the low-income subsidy.
Hope this helps.
HUGS,
Mark
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Thanks Mark for the, as usual, excellent advise
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I am not sure. Medicare will cover some things I didn't expect, as someone here mentioned it is covering their Egrifta.
But, what I would do is go on line to the Medicare web site and look into the Part D plans. Part D is the part of Medicare that covers medications. You can actually look by zip code for plans available in your area. Once you pick two or three, you can compare them.
You can customize it with your meds, so you can see whether the plans cover it. It will also let you know if there is a seprarate premium, which some do have.
If your income is low enough for you to qualify for low-incoime subsidy through Social Security, you should be OK. Their copays are quite low.
But, if you make too much from SSDI, or retirement, depending on your age, you could be exposed to the infamous donut hole, which could cost you plenty.
I would check all this out way in advance, so you can make plans or changes as you need to. If you have an ASO, I would contact your case manager to see what he or she says.
In some states, including mine, there is a seperate type of insurance you can get in place of a Part D plan that would allow yout avoid the donut hole if you don't qualify for the low-income subsidy.
Hope this helps.
HUGS,
Mark
Here is the link to the Medicare web site Mark mentions: http://www.medicare.gov/default.aspx