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Author Topic: Lipodystrophy FAQ?  (Read 5923 times)

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Offline allopathicholistic

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  • Posts: 3,258
Lipodystrophy FAQ?
« on: June 16, 2006, 09:18:36 PM »
HI ALL - Is there a lipodystrophy FAQ here? Primarily I ask on behalf of the newly poz. While I myself am not newly infected, I'm "newly sensible"!  ;D meaning after 5 years of denial I finally began HAART some 9 months ago ... In terms of body changes, my mind started to imagine skinnier calves, this, that, whatnot - all imagined. (I think! Hope so, it's been 9 months. Forgive my neuroses everyone  :D)

Here's my comfort (and I should have researched this much sooner): In terms of meds and lipodystrophy, I am not on any of the "usual suspects" i.e., AZT, Trizivir, Crixivan, Zerit, Combivir ... this is why I used the word "imagined" above (I'm on Lexiva, Norvir, Epzicom)

So I'm thinking: Some newly poz folks might think: "Oh no! Lipodystrophy's gonna get me!!" where they need not think that, or, need not overreact.

So my bottom line question for everyone here is this: Would it be fair (or dangerous) to state that some meds are more likely to cause lipodystrophy while other meds are less likely to cause lipodystrophy?

See, I feel like I caused mental drama for myself and it was *FLUFF*. If I can help spare a newly poz person that silly crap, that would gimme satisfaction on some level

Thanks,
Alex
« Last Edit: June 23, 2006, 02:43:06 PM by allopathicholistic »

Offline bobino

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  • Posts: 264
Re: Lipodystrophy FAQ?
« Reply #1 on: June 16, 2006, 10:06:19 PM »
There is no question that certain medications are more likely to cause lipodystrophy than others.  But the newly poz (and especially the still negative) should realize that HIV itself can cause lipodystrophy.  I'm not on meds, I've only been poz for a couple of years, and yet I'm experiencing lipo right now.

My point is that whether you're on meds or not, you should be alert to the signs of lipodystrophy.  At this juncture, of course, there appears to be very little that can be done about it, but this doesn't mean you shouldn't bring it to your doctor's attention if you see it happening.
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline allopathicholistic

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  • Posts: 3,258
Re: Lipodystrophy FAQ?
« Reply #2 on: June 17, 2006, 10:06:35 AM »
There is no question that certain medications are more likely to cause lipodystrophy than others.  But the newly poz (and especially the still negative) should realize that HIV itself can cause lipodystrophy.  I'm not on meds, I've only been poz for a couple of years, and yet I'm experiencing lipo right now.

My point is that whether you're on meds or not, you should be alert to the signs of lipodystrophy. 

Thank you for educating me - I didn't know hiv itself can cause it

Offline ZCorker

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  • Posts: 48
Re: Lipodystrophy FAQ?
« Reply #3 on: June 28, 2006, 03:32:52 PM »
   I have been getting a lot of my information from Natap.org and from Rita Reports.  You can subscribe to Rita Reports at <rita@centerforaids.org>

   I can provide you some information on the Australian, French and US studies for sunken face.  Apparently all of these studies demonstrated that the glitazone class of drugs can restore the sunken face by causing adipocytes (fat cells) in the face to start growing again.  However, the glitazone class of drugs is not FDA approved for this condition and neither Lilly and GSK are seeking approval.  I blame hiv patients for this situation.

  Rita reports did disseminate information from Australia that indicates the buffalo hump was caused from insulin resistance and the body producing too much insulin.  Again this can be treated with standard diabetic medication.  The only problem is that you can't get your hands on it unless you have blood sugar of 120 or more. 

   Serostim is approved for extended stomachs, but you have to be carefull that your extended stomach isn't being caused from an insufficiency in Leptin.
Unfortunately there is no standardized test for Leptin and there is no standardized test for Blood Serum Adiponectin, a hormone increased in the body by Actos.  Again I blame hiv patients for a lack of activism.

   There is little if anything going on to address these problems.  As a matter of fact, I just found out that the John Hopkins Lypodystrophy Clinic has been permanently closed due to a lack of funding.  This information was provided to me this morning by the main 410-955-0670.  I am hoping that patients will call and e-mail Dr. Francesco to see if we can get the clinic reopened.  His contact number is 410.955.5515.  His voice mail seems to indicate that he is only available for taking calls on certain days.  I have sent him a couple of e-mails previously to <joeco@jhmi.edu>.  He hasn't returned them and if he is like most doctors, he probably doesn't have time to read them.

   If you want Lypodsytrophy to go away, you have to be willing to take time to fix the metabollic problems.  No one is going to do it for you.  Most doctors will chase you a way if you ask for Actos or Human Growth Hormone.  In addition, there are few if any standardized test for most of these endocrine problems. 

   Do feel free to contact me if you want to work on some activism projects to get some standardized tests created and better access to treatments for Lypoatrophy.  I am thoroughly disgusted at all of the hiv patients that are opting for the cosmetic fix.  Little do they realize that failure to correct the underlying metabollic problems greatly accelerates arteroschlerosis, heart trouble.  The likelyhood of having fatal and non-fatal heart attacks from a failure to treat the metabollic problems is quite real.  Don't forget that heart disease is the number one killer in the US -- particularly if you are male.  The metabollic problems that hiv patients have are real.

  Actos nees to be started early.  If you develop a Class 3 or 4 heart condition, they can't give it to you.  In addition, there are risk taking it with insulin or taking too high a dose.  You can read all of the adverse events on Medline.  I do caution you to read through the full reports of each adverse event instead of merely the titles.  This will give you a better understanding associated with the drug.  The data todate seems to indicate the drug needs to be taken for prevention.

  Another problem we have with clinicians is dosing.  The dose given to hiv patients is not necessarily the same as that of a diabetic.  Most doctors want more studies in this regards.

  I hope you will get active.

ZCorker
<rjs4you @ juno.com>

 ::)

Offline jack

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  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Lipodystrophy FAQ?
« Reply #4 on: June 28, 2006, 05:58:49 PM »
Fat deposits(lipodystophy) are not caused by HIV, they are caused by the drugs. The problem is no one really knows for sure which drugs, but PI's supposedly inhibit the metabolism of carbs by as much as 30%.
I have used serostim, and while it may  add pounds,it doesnt take the fat deposits off. I have used metaformin,and it did absolutely nothing to stop the fat from accumalating. Now maybe it works for some, but if it did I think more Drs would be telling us to use them.
I also suffered for a year or so from the condition where you get real thin and veins are protruding everywhere.  It went away only to be replaced by the much worse fat depostis.

Offline jack

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  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Lipodystrophy FAQ?
« Reply #5 on: June 28, 2006, 06:08:10 PM »
Zcor, I have to ask,do you have lipodystophy? Have to tried metaformin or serostim? Many of us have. They dont work for many. Now maybe serostim will add some pounds to those of us who have lost pounds but it doesnt help redistribute fat or metabolize it. It if did everyone would be using it. I used it for a year. It was a waste of time and had horrid side effects.
I was able to lose all my lipo fat on a three drug vacation.  I also have had liposuction twice. You have a problem with that?
Lipodystrophy is not the fault of HIVers, it is what happens when drugs are rushed to mkt without knowing the full side effects and then Drs. and drug companies blame the side effects on patients diet or lack of exercise.
do you have a hump? or gobs of fat on the back of your neck the size of softballs? Or how about fat deposits the size of golf balls behind your ears? What about thirty pounds of fat on the middle of your back? Till you do,dont belittle those of us who have gone the cosmetic surgery route. Its the only thing, outside of stopping drugs,that really works.
Oh yeah, metaformin is no picnic and it doesnt work either.

Offline bobino

  • Member
  • Posts: 264
Re: Lipodystrophy FAQ?
« Reply #6 on: July 11, 2006, 12:27:27 AM »
I just want to weigh in here on a couple of things.  First of all, Jack, HIV certainly does cause lipodystrophy.  It is not caused exclusively by drugs.  I am relatively newly HIV+ (about 2 years) and I am experiencing lipodystrophy even though I have never been on meds and all of my numbers are good.  So it's a mistake to think that this condition is exclusively the result of antiretroviral medication.  It isn't, and I'm living, breathing proof of that.

Second, ZCorker, I have responded elsewhere to your comments about those of us who seek cosmetic treatment for our condition, and I will not repeat myself here.  I do think that you should take a look at the attached link to the interview with Dr. Kate Mulligan at UCSF and read what she has to say about the glitazone class of drugs.  The studies are inconsistent in her view.  It appears that pioglitazone (Actos) may have some marginal benefit in fat restoration, but as Dr. Mulligan notes, the effect is quite small.  So, although no one would be happier than I to discover that there's a drug I can take for my lipo, it doesn't look like there's any magic bullet at this point.

Finally, lest I be accused of insufficient activism, please note that I am volunteering for studies conducted by Dr. Mulligan and her colleagues at UCSF.  It may not be earth shaking, but I think that it's the best use of my time.  Advances in this area depend on HIV patients who are willing to sacrifice their time to serve as guinea pigs.  I will let all of you know whether I qualify and what, if anything, I learn from the studies.

John

Interview with Dr. Mulligan:

http://www.thebody.com/lipo/kmulligan.html

Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline J.R.E.

  • Member
  • Posts: 7,094
  • Joined Dec-2003 Living positive, since 1985.
Re: Lipodystrophy FAQ?
« Reply #7 on: August 25, 2006, 08:43:55 AM »
Hello Alex,

In case you may have missed it, there was this podcast ( from the Toronto convention) that you may find interesting ; ( lets see if I can link this properly ;

http://www.aidsmeds.com/news/Podcasts/Kotler.mp3

(it will need to download)


If that link doesn't work, in the "News Section" under the podcasts, look for this :

Podcast: Are Crix Bellies & Buffalo Humps For Real? Kotler Responds to Critics of FRAM (8/16/06)
8 minutes (7.2MB mp3) 

AIDSmeds Founder Peter Staley interviewed Dr. Donald Kotler, Chief of Gastroenterology at St. Luke's-Roosevelt Hospital and one of the investigators in the controversial FRAM study, which concluded that the fat gains seen by some people with HIV might not be lipodystrophy, just people getting fat.




Ray
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 allopathicholistic

  • Member
  • Posts: 3,258
Re: Lipodystrophy FAQ?
« Reply #8 on: August 25, 2006, 08:56:32 AM »
Thanks Ray. I've never heard of the FRAM study ....while it's very likely many people gain fat from common overeating, lack of exercise, blah blah, I assume they're referringto the belly. Because (someone correct me if I'm wrong!) buffalo humps!? - come on - HIV negative folk don't get buffalo humps

Offline J.R.E.

  • Member
  • Posts: 7,094
  • Joined Dec-2003 Living positive, since 1985.
Re: Lipodystrophy FAQ?
« Reply #9 on: August 25, 2006, 09:09:23 AM »
Hello Alex,

Unless I am mistaken One can get Buffalo hump, if you are HIV negative. I believe it also can be hereditary. Someone please correct me if I am wrong.... ???


Ray
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 jack

  • Member
  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Lipodystrophy FAQ?
« Reply #10 on: August 25, 2006, 10:28:44 AM »
the condition is called "cushings syndrome". My Dr. started with the bull shit that maybe I should go on a diet, after his "it just your imagination" tactic failed. I actually had the blood tests done for cushing. negative.
All I can tell you about lipodystrophy is when I stop taking drugs the fat goes away,not all of it, but most of it.
The swollen parotid glands and sunken cheeks "look" that some hivers have(ME) resembles another symptom of cushings called "moonface".
So if people ask you why your neck is fucking fat or why you have a hump on your back,or what the hell are those tennis ball sized gobs of fat on the back of your neck, you can always tell them you have Cushings.

 


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