Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
September 18, 2014, 04:08:38 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 639265
  • Total Topics: 48527
  • Online Today: 223
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: New lipo resource  (Read 10090 times)

0 Members and 1 Guest are viewing this topic.

Offline GSOgymrat

  • Member
  • Posts: 5,023
  • HIV+ since 1993. INTJ
New lipo resource
« on: June 22, 2006, 03:43:55 PM »
The Body has a new Lipoatrophy Resource Center with a lot of information on lipo and treatments. You can check it out http://www.thebody.com/lipo/index.html

Ford
« Last Edit: June 22, 2006, 04:51:26 PM by GSOgymrat »

Offline Jacques

  • Member
  • Posts: 171
Re: New lipo resource
« Reply #1 on: June 22, 2006, 11:34:15 PM »
This site is very interesting,

Thanks for posting it ,Ford

Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline bobino

  • Member
  • Posts: 264
Re: New lipo resource
« Reply #2 on: June 23, 2006, 01:11:02 AM »
Ford,

Thanks for posting this.  Your story is really enlightening, and it's great to have the benefit of all the research you've done.

As for me, I'm seeing a plastic surgeon soon about Sculptra injections.  I live in California, so I might actually get this covered by insurance.

Thanks again,

John
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline ryeguy

  • Member
  • Posts: 173
Re: New lipo resource
« Reply #3 on: June 23, 2006, 08:00:04 AM »
;D Thakyou so much for this site. I have found much good info which has helped me make some decisions about my Haart. I have been on Trizivir for over 5 years now and I see the effects of it on my legs and back.

On Monday I will talk once more with my Doc. And tell him I want a change; a new Haart without AZT. I am sure this should be no prob. I think It's just to bad that my Doc. did not see this as an option for 1 year as I asked him what we could do about my lipo. sometimes the best medicine is research and taking responsibility for ones' self.

Thankyou for sharing your story and this great info, you have hepled me ;D

Yours,

Rion Turner

Offline pozniceguy

  • Member
  • Posts: 1,177
  • Niceguy Dallas
Re: New lipo resource
« Reply #4 on: June 23, 2006, 07:52:35 PM »
Thanks Ford ..I read the articles for nearly an hour..interesting stuff..some of which I have personally experienced and can vouch for the study results as an individual    ..overall wasting ( fat and muscle ) loss of fat in arms , face
( cat 5), legs and especially butt... 
I hope some of this research produces a reversal process and a preventative process for the rest of you who haven't deteriorated as far as I have over the last 12 yrs......

I am enrolled in a Sculptra program, have my 4th treatment Monday ( 26th )  starting to show some good results.possibly 4 more treatments...
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 tuggem

  • Member
  • Posts: 130
  • Ron Hudson, same body, new face
    • 2sides2ron
Re: New lipo resource
« Reply #5 on: June 26, 2006, 01:05:10 PM »
hi guys,

I know that they call this buffalo hump and also refer to the Crix-belly of fat redistribution.  Do any of you have just a single badly placed location of fat on your body?  I do...don't laugh....

My legs, arms, chest and back are all very lean and you can see the muscles as if I were a model for physiology class.  However, I do have the "hump" hump.  Or that is what I call it.  It is a three or so inch thick pad of fat that extends from the beginning of my pubic hair, down to the beginning of my scrotum.  It is embarrassing in that it is slowly swallowing up my penis.  I have watched it grow for 3 years now and have considered liposuction, but am afraid it would just come back and I know how painful that would be from having had a lymph node removed in my groin once.   Also Medicare would likely not cover liposuction unless the fat were a life-threatening isssue.

My doc has never seen anything like it...and I may have had the highest levels of triglycerides in my clinic at one point: 8,250 mg/dl.  One of the phlebotomists said that they had never seen anyone with a level that high who was alive.  When they drew my blood, it apparently turned white in the tube.

I now take 6 grams of fish oil a day and watch carbs closely (also became diabetic at the same time this all started).

Can anyone relate to any of this or has anyone had similar issues?

Ron
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline ZCorker

  • Member
  • Posts: 48
Re: New lipo resource
« Reply #6 on: June 28, 2006, 03:17:48 PM »
  I found your posting on Lypoatrophy interesting, but your posting appears to be mainly for a cosmetic fix  (covering things up), instead of fixing the underlying metabollic abnormality. 

  There have been metabolic studies in both the US, Australia, and France to address the issue of fixing the sunken face.  In the US, a small study by GSK using Rosiglitazone came back favorable.  And in Australia and France, a broader study demonstrating Pioglitazone (Actos) demonstrated safety and efficacy.   
There is also a broader peripheral artery study in the US for reversing and preventing peripheral artery disease with the drug Actos (Pioglitazone).  Unfortunately the study has excluded hiv patients in most cases or the study was not used prophylactically and only after extensive artery damage was discovered.

  Pioglitazone appears to have a slightly better safety and efficacy profile instead of Rosiglitazone.  For that reason I am not an advocate of Rosiglitazone.  Unfortunately Lilly Pharmaceuticals has not been an advocate of funding studies with hiv patients.  Dr. Porksen's contact info at Lilly is PORKSEN_NIELS_KARL@LILLY.COM  I would suggest that someone call the main toll free #800 at Lilly and find out who is coordinator studies.

  Keep in mind that the sunken face is thought be cause from a different hormonal insufficiency than an extended stomach.  Simply covering up your vanity and hiding your sunken face from the world doesn't fix your problem and it is this type of mentality that his making it difficult for hiv patients to get the real help that they need.

Offline bobino

  • Member
  • Posts: 264
Re: New lipo resource
« Reply #7 on: June 30, 2006, 12:51:12 AM »
After reading ZCorker's post, I feel impelled to respond.  Although I fully agree that it would be far better for all of us suffering from lipoatrophy/lipodystrophy if we could find something that would treat the underlying condition, it seems that such a treatment is not imminent.  Thus, people suffering from the condition are left with an often serious disfigurement and suffer from the social stigma that such a thing entails.  Many people with facial wasting become depressed and socially withdrawn.  It affects their love life, their social life, their friendships, and even their work. 

I therefore think it is unfair to characterize a person who seeks cosmetic treatment as "vain."  People like Ford, who was kind enough to document his experience for us, aren't running out to get a nose job or a tummy tuck.  They're trying to restore some semblance of their former appearance.  All they want to do is look more normal and not be subjected to stares and stigman.  To me, that's not vanity.

I fully intend to try Sculptra treatments.  And if they don't work, I'll look into PMMA.  Even if these treatments do work and restore something like my old face, I'm not going to be gorgeous or a movie star.  But if I'm lucky, I will look like me again.  That's all I want, and I don't think it has anything to do with vanity.

John
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline tuggem

  • Member
  • Posts: 130
  • Ron Hudson, same body, new face
    • 2sides2ron
Re: New lipo resource
« Reply #8 on: June 30, 2006, 09:26:43 AM »
I would add as well that taking fish oil and watching carbs/controlling diabetes is one way to deal with the underlying condition.  It does not seem to reverse the cosmetic issues, however.

The Duke ID clinic is running a study for a nutritional supplement that has been approved in Europe for this issue, but the study is closed for diabetics, so I can not participate.  If any of you are interested, I can try to learn more about the study.

Ron
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline frenchpat

  • Member
  • Posts: 516
  • Love your friends, don't eat them.
Re: New lipo resource
« Reply #9 on: July 15, 2006, 03:05:14 AM »
Hi everyone,

in my search for more info about filler treatments for lypo I found this:

http://trt-5.org/article46.html

it exists only in french, sorry...

Pat
People have the power - Patti Smith

Offline bobino

  • Member
  • Posts: 264
Re: New lipo resource
« Reply #10 on: July 15, 2006, 03:37:43 PM »
Thanks for the article, Frenchpat.  I found it helpful because it discussed certain aspects of Sculptra/NewFill treatment that I had not seen in other sources, and I'll mention a few here in case those who don't read French are interested. 

Most notable for among the issues discussed were the importance of preinjection evaluation of the patient's skin and of avoiding sun exposure following treatment.  I was also pleased to see that the doctors discussed the adverse reactions to Sculptra, such as nodules and inflamed granulomas, because the promotional literature for the product glosses over those issues (for obvious reasons).  Despite this, as someone who is about to receive Sculptra injections, I was heartened to see that there is a very low incidence of these adverse reactions and that they do not appear to have occurred in HIV positive patients.  I also learned that doctors are hesitant to inject Sculptra in areas where the skin is thin and close to the underlying bone, because this is thought to invite the formation of granulomas.  So I guess I can forget about using this on my forehead . . .

The portion of the article on BioAlcamid was also interesting, although that product is not available in the United States.  It is available in Mexico, but as I understand it, there is now a trend in favor of the use of PMMA over BioAlcamid. 

Anyway, thanks a lot for the article.  Please post any others that you find. 

John
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline frenchpat

  • Member
  • Posts: 516
  • Love your friends, don't eat them.
Re: New lipo resource
« Reply #11 on: July 15, 2006, 03:59:28 PM »
Glad it was of interest.

In the future when posting french info I will try to give everyone here a translation in english; I couldn't do that today because I did it from work and had little time. I have an appointment with a french plastic surgeon next thursday to discuss possible treatment.

New Fill (sculptra) is, as far as I know, the only treatment that is reimbursed by the Securite Sociale, our National Health Service - save for the markup doctors will put on top of the standard price (but this can be paid for by some insurance but not always): Money is definitely a factor but I will enquire about other options such as Bio Alcamid.
I will get a second opinion when I visit my doctor in september as he's arranging for a meeting with a surgeon he works with. I will keep you informed.

Pat
People have the power - Patti Smith

Offline panda

  • Member
  • Posts: 224
Re: New lipo resource
« Reply #12 on: July 20, 2006, 11:07:41 AM »
Hi, need your experience to assit me taking a decision, I want to inject my own fat to my face, will it work?how about lipo sunction, is it normaly work? what about the uridine? itake videx + viread+ skaletra but I did take zerit 2 years ago which made my lipo a disaster , is it woth trying? what about your mussle? I want my legs look fatter/bigger (i am woman) so by taking weight training will it help and how oftenly?

Offline tuggem

  • Member
  • Posts: 130
  • Ron Hudson, same body, new face
    • 2sides2ron
Re: New lipo resource
« Reply #13 on: July 23, 2006, 08:09:47 AM »
I am out of my element here, but have heard that removing fat from one location and injecting it into another is a temporary solution that can also cause problems of clumping of fat cells before they just dissappear again.  Is that the understanding everyone else has?
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline Lido

  • Member
  • Posts: 37
Re: New lipo resource
« Reply #14 on: July 26, 2006, 06:20:39 AM »
Hi
I just read about New Lipo Resources. I have ordered Nucleomaxx to give it a try on my deformity.
Has anyone used this before and what were the results and how long did you use it.
Thanks Lido

Offline bobino

  • Member
  • Posts: 264
Re: New lipo resource
« Reply #15 on: July 27, 2006, 02:05:18 AM »
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline Lido

  • Member
  • Posts: 37
Re: New lipo resource
« Reply #16 on: July 27, 2006, 05:16:03 AM »
Hei Bibino
Thanks very much for your reply, I will try the one months dose that i have already ordered and seee. What about just eating alot of sugar cane can it help? am real desperate with this condition.
Have a nice day.
Lido

Offline bobino

  • Member
  • Posts: 264
Re: New lipo resource
« Reply #17 on: July 28, 2006, 02:21:17 AM »
I don't think that eating sugar cane will help.  If you search elsewhere on this forum, though, you'll find information about other things that will raise your body's level of uridine, which is what Nucleomaxx is supposed to do.
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline amiracle

  • member
  • Posts: 1
Re: New lipo resource
« Reply #18 on: August 31, 2006, 12:35:08 AM »
Hi Im fairly new here but have been reading for a while.
My breasts started growing 6 months after starting crixivan (usually wouldnt be a problem for a woman but I was already a D), I changed meds right away to sustiva wich slowed down the growth but did not stop it. Within a year I was in an E, you want to talk about UNCOMFORTABLE!
Had a reduction and then the belly started to grow, and grow, and grow. Ive gone from a size 10 to an 18, and have to wear a size 3x top, my waist measures at 46"
I am litterally the same size I was when I was 9 months pregnant with my son.
The constant pain of all this fat pushing on my ribs is sometimes unbearable.
And NO ONE will help me.
My docs changed my meds many times and nothing stops it, and not one plastic surgon will touch me with a ten foot pole.
I eat well, not a health food nut but not a junk food junky either, I work a 30 hour a week retail job so Im pretty active all day, and I have 2 teens to keep up with.
I even quit my meds for a year and all it did was stop growing, but nothing went away.
My face is okay so its not a problem but Im at my wits end with the stomach.
What are we supposed to do?!

Offline tuggem

  • Member
  • Posts: 130
  • Ron Hudson, same body, new face
    • 2sides2ron
Re: New lipo resource
« Reply #19 on: September 01, 2006, 08:24:55 AM »
I just found bluish spots on my buttocks 2 weeks ago.  At first, I thought it was KS, but on checking with my doc, discovered that my butt has wasted so badly now that I am sitting on the bones in my rear and it is causing bruising.  He is checking on options for medically necessary reversal procedures as I am also diabetic and the presence of lesions can be a serious problem.  Medicare is my insurance carrier, so the question is whether or not the government will consider this medically necessary.  In the meantime, my facial wasting is becoming more severe with time, but I seem to be the only one noticing it--except for the friends who see me only every year or so and who exclaim "OH, you have lost weight" when they see me.

Unfortunately, my ARV treatment involves Videx EC after some 12-15 years of drug therapy.  It is one of the few drugs that still works in combo with 1400 mg Lexiva BID.

Options for butt rebuilding seem to be implants and injections.  Interesting that this article focuses mostly on the face and not on the rear.  I am not the kind of guy who would normally worry about aging, prefering to do it gracefully than to look like I have stuck my finger in a socket and then sprayed "fixer" on my facial expression to freeze it in place.  On the other hand, I also had not counted on drug-induced wasting.

Oy, the things we get to go through, eh?

Ron
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline frenchpat

  • Member
  • Posts: 516
  • Love your friends, don't eat them.
Re: New lipo resource
« Reply #20 on: September 01, 2006, 12:17:40 PM »
Hi Ron,

sorry to hear about the evolution of your lipo. I am sitting on my sitting bones right now and can feel them... but it is not as bad (yet ???).

The doc I saw the other day regarding newfill (sculptra) treatment for my face mentioned another patient who had severe buttocks wasting and went for implants.
In my search for more info about fillers it surfaced that Bio Alcamid can be injected in large quantities to treat buttocks. I seem to remember their site even has pics (before after type). I believe there is some info about this kind of filler treatment at http://trt-5.org/article46.html but it is in french.

Unfortunately some here have reported that Bio Alcamid (made in Italy) is not yet available in the US.

In the meantime you could get one of those gel cushions they make for patients in hospital (can't remember the name of the gel...) whenever you have to sit; they are made to prevent the problem you are facing.

Bonne chance

Pat
People have the power - Patti Smith

Offline bobino

  • Member
  • Posts: 264
Re: New lipo resource
« Reply #21 on: September 02, 2006, 07:48:58 PM »
Ron,

Also read Ford's (GSOGymrat's) posts about his treatment with PMMA.  He had his butt "refilled" with the stuff.  He had to go to Brazil for it, unfortunately, but I think that the treatment is under review by the FDA for use here in the U.S.

As for your facial lipo, I have the same reaction.  Few people seem to notice it other than to say, "Oh, you've lost some weight."  In fact, that was how I first noticed it -- I wondered why people kept telling me that when, in fact, I hadn't lost a pound.  I've now had two Sculptra treatments and look pretty normal.  (Not the same as I looked before, mind you, but at least not wasted looking.)  Sculptra's patient assistance program may be of interest to you since finances sound like they're an issue.

Best of luck,

John

Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline tuggem

  • Member
  • Posts: 130
  • Ron Hudson, same body, new face
    • 2sides2ron
Re: New lipo resource
« Reply #22 on: September 03, 2006, 06:24:17 PM »
Thanks guys.  I will be talking with my doc this week to see what he is learning from his colleagues.

Ron
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.