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Author Topic: Do we all experience Lipo?  (Read 12548 times)

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Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Do we all experience Lipo?
« on: January 10, 2007, 11:31:26 AM »
I am newly diagnosed and was curious to know if all treatments cause lipo and are there people taking HIV meds for many years who dont develop lipo? I also heard lipo can make you gain weight?
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline pozniceguy

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  • Niceguy Dallas
Re: Do we all experience Lipo?
« Reply #1 on: January 10, 2007, 01:49:25 PM »
Lypo is still a "mystery"  lots of theories but so far no real evidence of cause / effect....some people get it just with HIV  ...no meds....  some people get all over "fat loss"   some people get "humps" and some people really gain weight.......there seems to be some meds that accelerate the problem..there are many studies of the mechanism that cause this condition and a few are beginning to show results......so far no "cure" has been demonstrated
I have had the condition up to the worst cat 5 level +  and have been treated with Sculptra  ( a face filler material )  but the skinny arms/ legs/ butt are still there.........read some of the old posts and you will get a sense of how varied the condition can be and the things people have done  to "fix" themselves...

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline J.R.E.

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  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: Do we all experience Lipo?
« Reply #2 on: January 16, 2007, 07:46:12 PM »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Central79

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  • Posts: 527
Re: Do we all experience Lipo?
« Reply #3 on: January 23, 2007, 11:55:12 AM »
Hey

It's funny how lipo scares me, a newly diagnosed person some way away from meds. It's nice to know somebody else is worrying about this too - even though maybe we should chill a bit.

From what I've read the main culprits for lipo are thymine analouges like d4t (Zerit) and AZT. Other drugs have a smaller effect. You won't be put on these drugs in the newer starting regimes, and lipodystrophy, although not a thing of the past, seems to be decreasing in incidence. The mechanism is supposed to be mitochondrial toxicity, which subcutaneous fat is very susceptible to, which causes lipoatrophy (loss of fat), whilst the high blood fats caused by the drugs leads to fat deposition elsewhere. It's complicated, and incompletely understood, least of all by me.

Personally, if you're worried about this I would check out the lipoatrophy resource centre at thebody.com or type it into aidsmap.com. In the meantime, antioxidants, weight training and generally looking after yourself is supposed to help a lot. Check out nelsonvergel.com. My hero.

Yours,

Matt.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Do we all experience Lipo?
« Reply #4 on: January 23, 2007, 01:30:29 PM »
it seems like there is not much evidence as to what, when and why Lipo occurs while one meds. I been told by many to stop obsessing over it but it's real hard when you are 26 years old and have a low self-esteem already. I've seen some people with HIV progress very badly and some with very little change. I want to be as informed as I can possibly be before deciding to take meds. It seems like doctors seem to not emphasize that your appearance can change drastically they are more focused on what is occuring in the inside which is priority. Appearance plays a role in my work and social life and that is also part of my life. People keep telling me meds have improved but I guess we are the new guinea pigs of the new drugs and it's very scary. If I were in my Golden Years already lived through many years perhaps it would be a little less important but I feel like my life was just beginning and it's just another burden that I may have to encounter soon.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Central79

  • Member
  • Posts: 527
Re: Do we all experience Lipo?
« Reply #5 on: January 24, 2007, 11:38:12 AM »
I'm 27, and I understand where you're coming from. I live in London, which has a big scene and all the competition and gossip that come with it. But I don't think I would feel any better about it if I was 40 or 50 or any age, with my "golden years" behind me. The way we look is integral to anybody's view of themselves, and seeing it change for the worse can be incredibly distressful.

I think lipodystrophy is an incredibly complicated process. I think a lot is now understood, but there are still gaps. I think the level of research going on into this (check out The Body's lipoatrophy resource centre) shows that HIV doctor's acknoweledge it as a real concern. When HAART first came out, people were prepared to put up with lipo to live but as the combinations are getting better, people have demanded more (or less!) in terms of side-effects. And quite right too.

I think by the time you and I are going to be on meds a lot more questions will have been answered, and first line combos are pretty good now and the whole repertoire of drugs is getting better. I think the most important thing to do is adhere to your first line drug regime 100% to prevent resistance and needing worse second or third line combinations. I weight train, which I think helps guys a lot - certainly masks a lot. And try to eat properly and keep your blood fats down.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Do we all experience Lipo?
« Reply #6 on: January 24, 2007, 12:20:07 PM »
Ok. Before I even read much about Lipo and meds, I had the impression that as long as you at plenty of food and adding more nutritional supplements and food you would avoid Lipo. I also thought that eating fatty foods would prevent you from wasting but as I inform myself more and read fatty foods will increase Lipo. Redistribution of fat and weight gaining can obviously be a sign to lower your fat consumption but is it the same for wasting?
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Do we all experience Lipo?
« Reply #7 on: January 24, 2007, 01:23:49 PM »
oh gee... don't you think if all it took was eating lots of food and nutritional supplements we'd all be avoiding getting lipo?  You think anyone WANTS it?  It's the medication... and now I'm confused with you because when you began this thread you inferred you understood this.
"Iíve slept with enough men to know that Iím not gay"

Offline jack

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  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Do we all experience Lipo?
« Reply #8 on: January 24, 2007, 01:37:00 PM »
Lipo is caused by the med and anyone telling you diff doesnt know what they are talking about. I was able to drastically reduce my lipo fat deposits while off meds for three years,and within two months back on meds I was embarrassed to be seen in public. It is the most difficult thing I have gone through in my life. Much more challenging emotionally and mentally than knowing I am HIV +.  Lipodystrophy destroyed my ability to go in public and do what I do. HIV did not harm my ability to make money in anyway, lipodystrophy did. I look exactly like I had hoped I would never look. Sure changes the way you look at other people.

Offline Merlin

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  • As My WILL, So MOTE It Be !
Re: Do we all experience Lipo?
« Reply #9 on: January 24, 2007, 02:30:45 PM »
I've been diagnosed with HIV since August 2005 and am still not on meds yet. I developed facial wasting a couple of months later after that. My consumption of food/supplements has increased dramatically due to my constant hunger and obviously I added some girth to my waist (from 30 to present 32). I'm 35, 1.89 m tall and weighs 83 kg (used to be 78 in '05). I was in great muscular shape then but have not been gymming since my diagnosis due to my constant daily fatigue. I'm still reasonably muscular except now my babies aren't as rock hard to the touch .;D I can also feel my energies returning slowing but it has been a really slow journey for me. I keep positive (no pun intended) and stay happy. I do what I can. I look forward to hitting my gym regiment once I am back on the energy groove again soon.

So personally, I believe lipo can occur with or without meds. Hope this clears the confusion. ???

PS: I am managing to accept my "new" look and do my best to look "fed". I try to get less anxious about it. Used to look dehydrated and gaunt, but occasionally if I had a good nite's rest and drank enough fluids to nourish my skin, it looks passable but obviously no where near my former glory. Ah well...the vanity of it all... :'(

I met my partner 7 months ago and his and general comments say I still look great although it never misses that ender, "but man, you lost quite a bit of weight on your face. Have u been sick?"
I'm seriously thankful and blessed that my hot looker of a partner loves me deeply and still finds me attractive. You have no idea what that does to my confidence. :D
I'll leave Hatred to those not strong enough to Love.

                            +++

Believe & The Power Of The Mind Transforms.
Make It Happen...

                            +++

I blame them for nothing.
I forgive them for everything.

---->> Mary J. Blige on dysfuctional parents

Offline Central79

  • Member
  • Posts: 527
Re: Do we all experience Lipo?
« Reply #10 on: January 24, 2007, 03:40:33 PM »
Yeah - its the drugs. But the worst culprits are kept away from front line medications and are now only really used in 3rd or salvage therapies. Of course, nobody really knows the side effects of the newer drugs yet - but based on what people think at the moment these shouldn't cause lipo. I think you can reduce it with weight training and good nutrition but if you're taking the drugs and genetically predisposed you're going to get it to some extent. Interestingly, more people report facial wasting than other forms of lipo. That's easily fixed with injections of some kind of filler like Sculptra. Other forms of lipo are less prevalent - some studies estimate about 30% of HIVers develop it.

I was really interested to real Merlin's comments about lipo without medication. I've read around this a bit, and there is some evidence to support this happening. But it's mainly in LTNPs off meds and it's very hard to distinguish from the natural process of aging as it happens so slowly. Of course a lot of it is down to perception. Merlin - can you post any photos of before and after? I find it really tough to work out how this could have happened to you over a couple of months. My gut feeling is that maybe it's something that's in your head. When I stop going to the gym, even for a day, I feel fat. When I was first diagnosed and walked into a bar I couldn't believe that nobody could tell. If you're getting comments, maybe it's because you're stressed out and not sleeping - as you alluded to in your comment. This would fit with depression, as would your lethargy (unless you have a very high viral load, in which case I guess you would be on meds in the US). Don't put up with depression - go see your doctor. I hope you understand that I'm not presuming to tell you what you look like, just something I recognise from having been there.

Matt.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline Catman

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  • Posts: 419
  • Blessed with more than 9 lives! + since 1986
    • Who is the Catman?
Re: Do we all experience Lipo?
« Reply #11 on: January 25, 2007, 10:46:41 AM »
I really believe its the meds more than anything else. I've mostly been healthy and within my normal weight limits, but my face always was getting a bit thinner through out the 21 years I've been positive. This past year I began with some meds that were chosen from my doc because of my "resistance" problem, and they HAVE made me "undetectable" for the first time in all these years but the lipo progressed to a stage that it even startled me. I would go to the gym at work and while lifting dumbells I would stare at the mirrored wall and remember that song from "Sesame Street" that said 'One of these things is not like the other, one of these thing is not the same, can you guess which thing just doesn't belong here, now it's time to play our game!' obviously that thing was my face. It didn't match my lean well cut body and I didn't look healthy because of it. If you have lipo and do weights your body gets cut up and that looks hot. But the face is a whole other story. I got very conscious about it and did research on the products available because I got to the point where I was shy about being in public areas in bright light. When I realized this I said, "It's time". It is great to have a partner who loves you in spite of it all, but this is a very personal matter and one must do it for "yourself" and no one else. If your doctor is wise, you may go through the meds that do not cause lipo and that will help out a lot. Still there is that chance that the condition of hiv may cause it per se, but I'm no expert here.
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline bobino

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  • Posts: 264
Re: Do we all experience Lipo?
« Reply #12 on: January 26, 2007, 12:48:59 AM »

Okay, I'm going to weigh in on this topic again like the broken record that I am.

Speaking from my own personal experience, lipo definitely DOES happen without meds.  I have been positive only about 3 years or so (at most), but I have NEVER been on meds.  Despite this, I have experienced very significant fat changes.  I have lost weight in my face, arms, buttocks, legs, and feet, but have gained it in my abdomen.  My waist is now at least an inch and a half bigger than it was less than a year ago, although my weight hasn't budged.  My hands have lost so much fat that it is painful for me to open jars or unscrew bottle caps.  My feet are now so bony that I cannot stand or walk for long periods of time.  I've had to get special padded inserts for all of my shoes. 

Losing this fat makes you realize how important fat is in protecting your body from injury.  My skin has become so thin that I get small cuts constantly.  It even hurts to brush my hair, because I no longer have any fat in my scalp, so the brush is basically just scraping skin that lies right on top of my skull. 

So for those of you who think that it's only the meds, I've got news for you -- lipo can result from HIV alone.  And it doesn't even require a high viral load or low CD4 count.  My VL is undetectable and my last CD4 count was 840.  I learned today of another guy who's an "elite controller" who's also suffering from lipo. 

I say all this in the hope that newly infected HIV patients will become aware that lipo can affect them.  If you think you're seeing changes, don't let anyone -- *especially* your doctor -- tell you you're imagining it.  The research has shown that patients themselves are much better at recognizing the early signs of lipo than their doctors are.  Right now, there's not much that can be done about the condition.  There's no proof that any of these supplements are actually beneficial, for example.  But anyone who's seeing fat changes should be alert to the problem. 

Okay, that's my two cents.  Hope it helps somebody.

John
Suivons les riviŤres
Gardons les torrents
Restons en colŤre
Soyons vigilants

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: Do we all experience Lipo?
« Reply #13 on: January 28, 2007, 01:17:11 PM »
it seems like there is not much evidence as to what, when and why Lipo occurs while one meds. I been told by many to stop obsessing over it but it's real hard when you are 26 years old and have a low self-esteem already. I've seen some people with HIV progress very badly and some with very little change. I want to be as informed as I can possibly be before deciding to take meds. It seems like doctors seem to not emphasize that your appearance can change drastically they are more focused on what is occuring in the inside which is priority. Appearance plays a role in my work and social life and that is also part of my life. People keep telling me meds have improved but I guess we are the new guinea pigs of the new drugs and it's very scary. If I were in my Golden Years already lived through many years perhaps it would be a little less important but I feel like my life was just beginning and it's just another burden that I may have to encounter soon.

I was diagnosed in March last year.   I'm still not on any meds and this was a major concern of mine too.  I spoke with my doctor who said many of the older drugs were really the cause of this.   In fact, if you read some of those drug comparison charts it indicates on some of them this is a side effect.   That doctor also said the newer ones didn't seem to have this problem.   I guess I'll find out eventually.   To me it seems so surreal to think I have some potentially deadly virus and yet I look in the mirror and I look fine.   

My personal belief is a lot of it is genetics.   I know people who've been positive for nearly 20 years who look fantastic and I've also seen some people who seem to have experienced more rapid changes in their appearence.   The one thing I've not heard anyone talk about are all the club drugs like crystal meth and cocaine.   Those are the people who I know that seem to really go to Hell fast.   

I definitely think the older meds are the primary cause.   Most of the people I know or run accross who've been positive for less than 10 years look fine and don't appear to have had the wasting or lipo.  But I do know a few who definitely had severe wasting prior to being on meds and then rebounded.

I know it's just a matter of time before I have to take meds.   So, I guess it's better to wait it out and see what comes on the market.   My heart goes out to those afflicted with the facial waisting.    Personally, I know I'm too damn vain and if it happened I'd be the first one in line at the plastic surgeon's office ; )

Thanks to all you guys for your honesty and thoughts!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Do we all experience Lipo?
« Reply #14 on: January 28, 2007, 01:59:05 PM »
Well, personally I only have so much faith in the "new drugs won't cause this" statement.  They *THINK* that is the case.  Obviously they are new so they don't *KNOW* that is the case, but yes they are better than sticking with zerit, azt and videx which they're rather sure do it.  Only time will tell.

I do, however, agree that one's genetic make up certainly will predispose folks.  I'm not sure if it means just getting lipo though or the DEGREE to which one will get it.  There are gradations of lipo from 1-4.

Anyway, look on the bright side.  At least facial fillers are becoming available more an more.  I realize it's not ideal but it's still worlds better than what was the case five years ago.
"Iíve slept with enough men to know that Iím not gay"

Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Do we all experience Lipo?
« Reply #15 on: January 28, 2007, 05:06:49 PM »
I've already gotten a couple of folks on this website annoyed for asking and worrying so much about lipo but I think it's a valid concern and question.

I agree with Philly, we simply don't know if the new meds will cause Lipo/wasting. I sincerely think it will be alot less but eventually our bodies can only handle so much and we will redistribute fat and waste in the end. Hopefully not, but it seems that the process to come up with new and better treatments is very slow. Recreational drugs will contribute to the way your face looks especially cocaine and crystal meth. I know one guys who has been poz since 1985 and is in no way involved with any recreational drugs and takes care of himself and looks fantastic. Has recently started meds and is doing fine. I know another poz guy that was infected in 1993 and is into BB,FF, Recreational drugs and doesn't eat healthy and has severe wasting- he has lessen his party ways but it hasn't really helped him because he refuses to stop using meth. No one really knows who and when and how much lipo you will get but chances are we will get some form of lipo in the long term some more than others. But as Philly said there are treatments for that too.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline AustinWesley

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Re: Do we all experience Lipo?
« Reply #16 on: January 29, 2007, 07:51:26 AM »
Hey Ivan,

Yeah, it's interesting you bring up the guy who does drugs.   Meth will screw up anyone, but if you're HIV positive or other health issues it seems to really accelerate the damage.

Your concerns are valid.   I'm sure some will be pissed at me for bringing up the drug issue, but I don't really care.   It seems like the dirty little secret no one talks about.
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline jack

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  • fomerly the loser known as Jake
Re: Do we all experience Lipo?
« Reply #17 on: January 29, 2007, 08:55:05 AM »
I dont think anyone is pissed. Everyone is entitled to their own opinion, but as someone who has suffered from extreme lipodystrophy,which is large fat deposits that appear out of nowhere, like buffalo humps, triple chins,and big gobs of fats in strange places. I know that my lipodystrophy receded as soon as I stopped drugs, I dropped from 245 back to 180,my starting place. My waist went back to 36 from 44!!!!That was forty fucking four!!!! My neck size which was around 16 pre zerit and PIs went 24! Thats right twentyfuckingfour. Do you know what size of shirt you have to buy so you can put a tie on? I had to buy a couple of tents to wear. I was unable to go outside of my house for two years I looked so ghoulish. As soon as I started drugs again,reyataz , I ballooned from 180 to 230 in 6 weeks! That was 6fuckingweeks.  I know its the drugs,and one of the main reasons drs tell you it isnt or its all in your head is because they dont wanna be liable, and thats a fact.
As far as  new drugs causing lipo, I have no idea, but you can be sure there will some type of long term damage or sides for some people. These are powerful drugs that have been brought to market faster than other drugs to meet our needs and have not had sufficient trials for sides.

Offline Miss Philicia

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Re: Do we all experience Lipo?
« Reply #18 on: January 29, 2007, 01:01:02 PM »
Actually jack, I think doctors shield the truth about the drugs from one other big thing:  they want you to continue taking the drugs and not have adherence issue.  This was understandable somewhat in the past as there weren't as many alternative medication regimens available combined with the fact they didn't yet have a handle on exactly what was causing lipo.  Now that's all changed so it's really important for the new comers here to be aware of the issue and discuss their concerns before starting treatment, if only to get a sense from their doctor if they know what they are talking about.  Not everyone does, and if they are dismissive with your concerns you may wish to question remaining with that doctor.

Of course, not everyone encounters lipo nor did they when some people first started to get it.  Some people even might get it in a small amount and look better Like if you have a baby face and only get a lipoatrophy of grade one... it will in effect make you look like you have cheek bones for the first time in your life.  Of course, if it continues on to stages 2-4 you'll start hating it.
"Iíve slept with enough men to know that Iím not gay"

Offline blondbeauty

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Re: Do we all experience Lipo?
« Reply #19 on: February 09, 2007, 07:22:27 PM »
Now Drs. make a difference between wasting, lipoatrophy and lipohipertrophy.
See these links.
http://www.thebody.com/confs/aids2006/wohl1.html?m166h
http://www.thebody.com/chat/lipoatrophy1105.html
I never experienced weight or fat loss during untreated HIV infection. Now that I am on treatment I am not experiencing any weight gain or faf loss.
My weight remains the same since 1995 and I wear the same size of pants since I was 18 y/o. I have been underweight for my entire life and I am unable to gain weight since I was a child. If I miss a meal I loose weight very easily.
My GP. calls me skinny and always says to me: "stand on the weight and lets see if marks something".
HIV has not changed my body shape yet.
Reply from Dr. Joel Gallant: You can't get lipoatrophy if you're not on medications. However, you CAN lose weight. Remember "wasting"? That's what happened to people in the bad old days before we had effective therapy. If you're losing weight after taking a drug holiday, maybe your body is trying to tell you something!

« Last Edit: February 11, 2007, 02:06:47 PM by blondbeauty »
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Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
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Offline bobino

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Re: Do we all experience Lipo?
« Reply #20 on: February 12, 2007, 02:17:07 AM »


Don't know who Dr. Joel Gallant is, but if he thinks you can't get lipoatrophy unless you're on meds, then he needs to talk to me.  I'm not on meds, and I never have been, but I have lipoatrophy.  So trust me, the good doctor is seriously misinformed.  This mistaken belief appears widespread even among doctors.  But the fact of the matter is that you *can* get lipo from HIV infection alone.

Maybe you need to let Dr. Gallant in on this . . .

John
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Offline Miss Philicia

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Re: Do we all experience Lipo?
« Reply #21 on: February 12, 2007, 02:35:54 AM »
One case is not much proof of anything... an anomoly
"Iíve slept with enough men to know that Iím not gay"

Offline bobino

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Re: Do we all experience Lipo?
« Reply #22 on: February 12, 2007, 02:56:48 AM »

One case is sufficient to prove that Dr. Gallant's assertion, i.e., "You can't get lipoatrophy if you're not on medications," is false.  If the assertion were true, then I wouldn't have lipoatrophy.  Perhaps what Dr. Gallant meant was, "It's unusual to see lipoatrophy in HIV+ people who are not on meds," but that's not what he said. 

My point is that these kinds of categorical statements are misleading.  Our knowledge of the effects of this virus is still limited, and it would be far better if doctors didn't make claims that are inconsistent with the facts.
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Offline blondbeauty

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Re: Do we all experience Lipo?
« Reply #23 on: February 12, 2007, 09:28:57 AM »
Dr. gallant would say you are suffering from "wasting".
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline mjmel

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Re: Do we all experience Lipo?
« Reply #24 on: February 12, 2007, 09:30:31 AM »
bobino,
Did your doc diagnose you with lipo or are you self-diagnosed? I'm interested in how you reached the conclusion you have lipo and how you made distinction from severe weight loss.
And, yes, I believe you can make an informed decision on your own. Just an inquiry.

Offline bobino

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Re: Do we all experience Lipo?
« Reply #25 on: February 12, 2007, 02:01:30 PM »
Blondbeauty,

I do not believe that I am suffering from "wasting."  There are at least two reasons I say this.  First, in general, people who are wasting lose weight, and they lose it all over their bodies.  I have not lost any weight.  What has happened, instead, is that I have lost peripheral fat (in my arms, legs, feet, buttocks, face, etc.) but have *gained* fat underneath my abdominal wall.  Another important distinction in terms of weight loss is that I do not appear to have lost lean body mass.  Body composition scanning shows that I have not lost any significant muscle mass.  In fact, my muscle mass is well above average for a man my age.  In other words, I have the classic symptoms of lipodystrophy. 

Second, people with HIV-related wasting have usually been positive for a long time and are seriously immunocompromised.  Neither is true for me.  I have only been positive for about three years, and my immune system is functioning pretty normally (VL undetectable and CD4 count of 840 at last check).  So if Dr. Gallant were to suggest that I am wasting, again, I think he would be seriously mistaken.

mjmel,

As the foregoing response makes clear, I have not experienced "severe weight loss" or indeed, any weight loss at all.  In truth, my weight is actually a couple of pounds *higher* now than it was when I first started noticing the lipo. 

With respect to the diagnosis, I have been seen by two individuals who conduct research into lipodystrophy for the University of California at San Francisco.  One is the research coordinator for Dr. Kathleen Mulligan, who was interviewed by thebody.com's Lipoatrophy Resource Center concerning her lipodystrophy research.  The second is Dr. Carl Grunfeld, who is one of the country's leading researchers in this field.   Dr. Grunfeld confirmed that I am having HIV-related fat loss, but at this stage he's not yet willing to call it "lipodystrophy," although that may change.  I am scheduled to see him again in a couple of months so that he can make a further assessment. 

Basically, I began to realize that something was going on about a year and a half ago when friends and family kept asking me whether I'd lost weight.  I found the questions curious, since my weight hadn't changed at all.  Only later did I realize that they were reacting to the changes in my face.  It dawned on my that my cheeks and temples were losing fullness.  In short, I didn't initially get the diagnosis from a doctor, but my HIV-induced fat loss has now been confirmed by people who are unquestionably experts in this field.

Sorry for the long post, but I think that people really need to understand that this condition is not necessarily "caused" by medication.   If you're looking for an effective treatment, you really can't be under any illusions about what the source of the problem is. 

Ask around here in the forum.  I'm not the only one to have experienced lipo without meds.  I'm just the most vocal about it.    ;)

John
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Offline Miss Philicia

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Re: Do we all experience Lipo?
« Reply #26 on: February 12, 2007, 02:14:04 PM »
One case is sufficient to prove that Dr. Gallant's assertion, i.e., "You can't get lipoatrophy if you're not on medications," is false.  If the assertion were true, then I wouldn't have lipoatrophy.  Perhaps what Dr. Gallant meant was, "It's unusual to see lipoatrophy in HIV+ people who are not on meds," but that's not what he said. 

My point is that these kinds of categorical statements are misleading.  Our knowledge of the effects of this virus is still limited, and it would be far better if doctors didn't make claims that are inconsistent with the facts.


I think there is a difference from weight lost and lipo.  At any rate, one isolated case doesn't not indicate much of anything.  Does he cite any studies?  Any other cases?  Otherwise this is just a useless personal anecdote on the internet.

Also, I believe there are cases of lipo in non-HIV infected people and perhaps it's just a coincidence that this is what you have, and is more having to do with genetics.
« Last Edit: February 12, 2007, 02:15:35 PM by philly267 »
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Offline mjmel

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Re: Do we all experience Lipo?
« Reply #27 on: February 12, 2007, 02:17:17 PM »
Merci. Compris.

Offline AustinWesley

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Re: Do we all experience Lipo?
« Reply #28 on: February 13, 2007, 11:42:02 AM »
Hey John and Blond,

It was interesting hearing from two very different views.   

I think a persons genetics are likely the number 1 factor, but my HIV doc leaned heavily with the side that older meds did cause lipo.  I guess the jury is still out on some of the newer ones?   

I wonder if perhaps some of these drugs just accelerate the process?   Anyone have study links to various meds and their correlation to lipo?

On a side note, I have one friend who to me looks like he has Aids.   He claims not to have taken meds in like 10 years.   However, to me it looks more like he's wasting because he's skinny all over.   I don't think he is healthy and hasn't been very proactive with his healthcare. 

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline RevMC

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Re: Do we all experience Lipo?
« Reply #29 on: February 15, 2007, 08:41:38 AM »
As a person who is 43 (going to be 44 in June)  After being POZ for about 19 years I'm starting meds again after being off for about 10 and only trying them for about a few months.

I'm worried about Lipo as well.  I've seen some posts in this topic that when people reach their golden years (over 40?????) they won't have to worry so much.

GET A GRIP!!!  40's is not Golden Years.  I'm worried about Lipo just as much as all of you in their 20's.  Even us 40+'s are worried about our looks.  You youngens aren't the only one's concerned that people will not want to date you if you have lipo.

Make the best of it and don't worry so much about the lipo issue.  Deal with it and keep going on with your life.  Life DOES NOT END when you hit 40!

Rev. Michael
Part of my story: "Sale Of A Lifetime" POZ December 2003
http://www.poz.com/articles/172_752.shtml

Started on Truvada and Viramune on 2/15/07

Jan 8, 2007   t-cells 215  Viral Load 10,000  24%
March 26'th  T-cells 306   Viral Load  UNDETECTABLE
June 2007 t-cells 375 Viral Load UNDETECTABLE
August 2007 t-cells 290 Viral Load UNDETECTABLE



Love and Light and Reiki sent your way,
Rev. Michae

Offline Miss Philicia

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Re: Do we all experience Lipo?
« Reply #30 on: February 15, 2007, 11:12:12 AM »
PREACH SISTER FIRE, PREACH!  I just turned 42 last week.
"Iíve slept with enough men to know that Iím not gay"

Offline AustinWesley

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Re: Do we all experience Lipo?
« Reply #31 on: February 15, 2007, 02:42:51 PM »
As a person who is 43 (going to be 44 in June)  After being POZ for about 19 years I'm starting meds again after being off for about 10 and only trying them for about a few months.

I'm worried about Lipo as well.  I've seen some posts in this topic that when people reach their golden years (over 40?????) they won't have to worry so much.

GET A GRIP!!!  40's is not Golden Years.  I'm worried about Lipo just as much as all of you in their 20's.  Even us 40+'s are worried about our looks.  You youngens aren't the only one's concerned that people will not want to date you if you have lipo.

Make the best of it and don't worry so much about the lipo issue.  Deal with it and keep going on with your life.  Life DOES NOT END when you hit 40!

Rev. Michael


Hey Michael,

It's interesting to me that you've not experience lipo?    If you are worried about it I'm presuming you've not had it?   

I'm all with ya on the 40 bit.   Just tell those punks you got two decades of cool on them ; )   

Anyways, I'm glad that you've manged to be one of the lucky ones to go so long without meds, but now you have my interest.   If you are saying you haven't ever experienced it then it would seem to me that in fact the meds are the most probable cause.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline jkinatl2

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Re: Do we all experience Lipo?
« Reply #32 on: February 15, 2007, 10:08:30 PM »
I am 41 years old, and have been on antivirals on and off (almost every regimen including/featuring AZT) since 1994. I have not experienced lypoatrophy or lipodostrophy.

I do not ascribe it to anything beyond genetics and sheer luck of the draw. I still use lipo issues as a major point when determining any new drug regimen.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline RevMC

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Re: Do we all experience Lipo?
« Reply #33 on: February 18, 2007, 09:12:22 PM »
I do have sunken cheeks but I attribute it to genetics.  My family is 100% french canadian and my mothers side of the fammily, ALL the men by the time they are in their 30's have the sunken cheek look.  Plus I've had quite a few teeth pulled on the top and don't wear my partial all the time so that adds to it.

Our bodies WILL change as we get older, but one thing that ALWAYS remains the same is. . .

the SEX is still great!!  If not even better I must say!
Part of my story: "Sale Of A Lifetime" POZ December 2003
http://www.poz.com/articles/172_752.shtml

Started on Truvada and Viramune on 2/15/07

Jan 8, 2007   t-cells 215  Viral Load 10,000  24%
March 26'th  T-cells 306   Viral Load  UNDETECTABLE
June 2007 t-cells 375 Viral Load UNDETECTABLE
August 2007 t-cells 290 Viral Load UNDETECTABLE



Love and Light and Reiki sent your way,
Rev. Michae

Offline jack

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Re: Do we all experience Lipo?
« Reply #34 on: February 19, 2007, 09:01:56 AM »
I have experienced both as I have detailed here ad nauseum.
I went through the weight loss thing while in a Crixivan trial. Trial dosage was probably too high. I dropped from 185 to 145 in a couple of months. Veins were popping out everywhere. I was so skinny people were jokingly asking me if I had Aids. Pretty funny. I also lost all body hair on crix, got a double frozen shoulder, and went to emergency room twice for very severe stomach pains. Being a guinea pig is no walk in the park.
A year or so after being off Crix the veiny thing got a little better and I gained my weight back.

A couple of years later(while on zerit and each new PI) my weight exploded upward from 185 to 250.  I developed a turkey neck that hung down over my collar,large tennis balls lumps of hard fat on back of neck, a buffalo hump, sacks of fat on sides of upper torso. I also started getting a little of the sunken cheeks thing, but nowhere near as bad as most. Oh yeah, I also have swollen parotid glands that give me a moon face look. Really cool. I still get looks from people  I know and dont know. Feel like a freak.

I was able to lose to all of my weight gain and most of fat deposit through liposuction,exercise,no carb diet and most important,a drug vacation.
Within 6 weeks of starting drugs back up I gained 40 pounds while on diet and exercising.(reyataz,the drug that isnt supposed to cause lipo)

the facts are that no one really knows what causes lipo,and why some get it and some dont. It will take years to figure it out. The other fact is, its better to be alive and look and feel like shit versus being dead.

Offline AustinWesley

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Re: Do we all experience Lipo?
« Reply #35 on: February 19, 2007, 09:09:51 AM »
I am 41 years old, and have been on antivirals on and off (almost every regimen including/featuring AZT) since 1994. I have not experienced lypoatrophy or lipodostrophy.

I do not ascribe it to anything beyond genetics and sheer luck of the draw. I still use lipo issues as a major point when determining any new drug regimen.



Hey Jkin,

I think you are correct, but you say you still use lipo when determining meds?   I've got to make my decision soon.  Is there some guide you recomend for this specific issue about meds?

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Miss Philicia

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Re: Do we all experience Lipo?
« Reply #36 on: February 19, 2007, 01:43:05 PM »
Wesley, it's a crap shot.  You either get it or you don't .  You can make some educated guesses with your doctors, but they're about 60% guessing too as how can they possibly know what these newest drugs will do?  NOBODY knew in the 90's that lipo would have it.  Hell, they couldn't even give it a name to me when I first noticed it.

I'm thankful mine's only a level 2 and not a 5, but whatever it's still not great walking in gay neighborhoods with queens staring at me "OMGAIDS" -- much less the fact that they're so tactless to do that.

Also, I probably don't look as bas as I think I do but that doesn't help, I know a few years ago it was at least a level 3.  I think I've gained some back on my current treatment.

And yes, genetics has a LOT to do with it.  My father and brother have flat asses, skinny legs and not much fat on their face... it's just mine is much more abnormal where they just look normal for their age.

In a nutshell, discuss it with your doctor but depending on what treatment you need to be on there's either the choice of a little lipo or saying alive.    What are you going to chose when it comes to that?
"Iíve slept with enough men to know that Iím not gay"

Offline AustinWesley

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Re: Do we all experience Lipo?
« Reply #37 on: February 19, 2007, 02:07:55 PM »
Hey Philly,

I'm gona choose to stay alive.   I just want to make the best educated guess possible.   I plan on Atripla, but don't know anything about Lipo and the effects.

Thank you for sharing your info. with us and me.   This isn't my biggest concern, but one of em.   

I think you're right likely it's more of a personal thing.   I have my own insecurities about flaws that I notice and others don't.  : ) 

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline jack

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Re: Do we all experience Lipo?
« Reply #38 on: February 19, 2007, 03:42:19 PM »
Just to be safe, go to a very low carb diet and exercise like a mutha.  Supposedly PIs inhibit the body's ability to breakdown carbs thus leading to humps and fat in odd places, but again no one knows for sure.

Offline dixieman

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Re: Do we all experience Lipo?
« Reply #39 on: February 20, 2007, 05:48:40 PM »
Yes, Ive noticed that I have a small belly... but, its all muscle... trying to get back to a waist of 30" instead of 33" and I've also had fat sucked out of my face... I'm checking on bioalcamid when it develops alittle farther... I have a more hollow look under my cheeks something I always wanted... kinda like Clint Eastwoods look but, its slowly changing and not for the best... a friend told me to build up my chest more to offset the small belly... but, my bubble butt is a thing of the past... still a cute butt but, its all muscle and no fat... life goes on... checking on whose the best doctor in Canada...

Offline megasept

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Re: Do we all experience Lipo?
« Reply #40 on: February 20, 2007, 10:33:42 PM »
I think a persons genetics are likely the number 1 factor, but my HIV doc leaned heavily with the side that older meds did cause lipo.  I guess the jury is still out on some of the newer ones?   

I wonder if perhaps some of these drugs just accelerate the process?   Anyone have study links to various meds and their correlation to lipo?Wesley

Wesley, et al.: I think you have it right, only maybe backwards. The meds cause the process...and maybe genetics (or smoking tobacco, or god knows what else) influence when or whether it happens. I have written this before, and I'll say it again; I was on 3tc and d4t for 2 1/2 half years when suddenly in the middle of some August I got weird wasting in all four cheeks and weird looking (not smooth) and feeling fat growth in belly and sides. The meds did it for me. I was sober, other than a weekly cocktail or wine. I never smoked. I think of it as crossing a threshold, like a dam got filled, and woooosh, it happened.

Just maybe "wasting" and "lipo" are undefined terms and that is creating some difficulty for doctors and patients. Let this athletic guy (my waist is 32" at 50) who's positive and lifted weights for 33 years say a few things:

Certain meds do cause lipo. Let's put any lingering doubts to bed. I think we all agree here.

Lipo is not normal aging and getting out of shape (adding fat). If our MDs weren't as out of shape as the general population they wouldn't dismiss the phenomenon so easily.

Lipo is neither caused, prevented, or solved by good nutrition. YIKES! I eat right and that's what I believe. Eat right for all the right reasons. Just don't expect miracles.

Exercise doesn't cause of negate lipo symptoms. Now maybe having big muscular chest and large lats will make your lipo waist look smaller, but it won't actually change it.

Lipo may gradually disappear, and I mean g r   a    d     u      a        l           l              y. But better late than never.

 8)  -megasept



Offline AustinWesley

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Re: Do we all experience Lipo?
« Reply #41 on: February 28, 2007, 02:39:23 PM »
Hey Mega,

Interesting insight and thoughts.   I don't plan to become a gymrat or radically alter my diet.   I know some who are adamant about that, but I didn't assume any of that would prevent lipo.

Thanks,

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline jack

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Re: Do we all experience Lipo?
« Reply #42 on: February 28, 2007, 04:57:36 PM »
obviously regulating your intake of carbs and sugar might stave off the fat thing, I have no idea about skin and bone look.
I have been on a strict no carb diet now for over two weeks. What a fucking drag. Anyways I have lost weight but now my hump and neck look even more prominent.

Offline ARMANDO

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Re: Do we all experience Lipo?
« Reply #43 on: March 04, 2007, 10:03:13 AM »
I AGREE WITH PHILLY 100%,HE TELLS IT LIKE IT REALLY IS!!!

 


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