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Author Topic: Slightly different issue - lipohypertrophy  (Read 5364 times)

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Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Slightly different issue - lipohypertrophy
« on: April 02, 2007, 06:46:51 PM »
Hey all,

I have had lipoatrophy for a number of years now. My problem is I am now developing lipohypertrophy.

I can live with the lipoatrophy, but the lipohypertrophy is really getting me down. My clothes are no longer fitting correctly.

Has anyone else noticed this? What did you do? Any suggestions?

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: Slightly different issue - lipohypertrophy
« Reply #1 on: April 03, 2007, 11:54:09 AM »
Hi Mark,

I remember back in 1995 or 1996 when Crixivan was the only protease inhibitor and people were starting to talk about "Crix belly."  You've been on Crixivan for 11 years, so I don't know if it might be the cause of your current lipohypertrophy. I do know that side effects don't necessarily manifest themselves immediately. For me, It took over two years on Viread for it to cause kidney problems.

I think your lipoatrophy is very likely caused or at least aggravated by the AZT.

You've had a good long run with your current drug regimen, but maybe it's time to talk to your doctor about switching to one that is less likely to cause lipodystrophy.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline brian

  • Member
  • Posts: 13
Re: Slightly different issue - lipohypertrophy
« Reply #2 on: April 03, 2007, 01:28:11 PM »
Mark,

Can you be more specific about your clothes not fitting any more?

Brian

Offline thunter34

  • Member
  • Posts: 7,314
  • His name is Carl.
Re: Slightly different issue - lipohypertrophy
« Reply #3 on: April 03, 2007, 01:56:19 PM »
I've said several times on here that I have trouble with my weight going up and down rapidly.  My base weight is 155-160.   In the past two months, I have gone from 175 to 160 and back up to 173.  My diet has remained relatively consistent throughout (except for a holiday season grazing that I admitted to).  Since starting meds, I have come within 10 lbs of 200.  Started 2006 around 190.  During last year, I had dropped all the way down to 150 and ended the year between 175 - 180.  I think that's a pretty significant weight fluctuation. 

If anyone comes up with some ideas, I'd be interested in hearing them as well.  Seems like when it is one of my times to gain, it doesn't matter what I do or don't eat- I'm gonna plump up regardless.
AIDS isn't for sissies.

Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: Slightly different issue - lipohypertrophy
« Reply #4 on: April 03, 2007, 07:54:02 PM »
Sure Brian,
I am developing a hump at the top of my spine/back that is made up of fat tissue. They usually call it a buffalo hump. I also have deposits at the base of my scull(in the back) and on the front of my throat. Net result is I cannot button shirts at the neck any longer.

I can barely button shirts with a 17 1/2 neck, but can't stand to have it buttoned for too long. I weigh about 168 pounds and stand 5'11", so I'm not that large.

Also, I am getting the Crix belly, and I believe the visceral fat is getting thick enough it is starting to push my internal organs around.

I look like a refugee: Skinny legs and arms, thin face, big swollen belly and a hump on my back. I feel like Quasimodo-lite.

Anyway, you asked.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: Slightly different issue - lipohypertrophy
« Reply #5 on: April 03, 2007, 09:25:38 PM »
Mark,
I wish you weren't so attached to a drug regimen that is probably making your problem worse.

There are no medals awarded to the person who has remained on a regimen for the longest period of time. And there are almost certainly other drugs that will maintain your undetectable viral load without causing further lipodystrophy.

Sorry for sounding like a broken record, but you and your doctor really do need to talk about a change in your drug regimen.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: Slightly different issue - lipohypertrophy
« Reply #6 on: April 04, 2007, 06:43:12 PM »
Hey Allan,

Yep, you are absolutely right and I have an appointment with the doc May 2. Call me anal, but I just hate the thought of changing the regimen.

Like I said, I learned to live with the lipoatrophy, but this is just too much. I just hope I can find a way to reverse it once I switch.

I was sorta thinking of Atripla. People seem to do well on it, or have psychotic breaks.

It would be sooo nice to be able to eat whenever I wanted to again.  ;D

Keep sounding like a broken record Allan. Some of us stubborn old farts need the repeated nudging.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: Slightly different issue - lipohypertrophy
« Reply #7 on: April 04, 2007, 07:41:38 PM »
Mark,

Hooray! I am so glad that you'll be talking to your doctor about changing your drug regimen. Your current regimen might have been state of the art in 1996, but a lot has happened in the field of HIV meds since then, and I'm confident you'll find a regimen that will be effective and will not cause further lipodystrophy. Although you've gotten used to the eating restrictions that go with three-times-a-day Crixivan, I think you're going to enjoy a once or twice-a-day regimen that will enable you to eat or not eat when you feel like it.

I understand the fear about changing a regimen that has given you eleven years of undetectable viral load and sky-high CD4's. I wish doctors would not focus exclusively on those numbers and take the trouble to monitor side effects like lipodystrophy. Lipo might not be life threatening, but I know from experience how it can damage self-esteem and affect the way we interact with others.

I only wish you didn't have to wait until May 2nd for the appointment with your doctor.

All the best to you,
Allan
« Last Edit: April 04, 2007, 07:44:21 PM by allanq »
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline jack

  • Member
  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Slightly different issue - lipohypertrophy
« Reply #8 on: April 05, 2007, 02:24:37 PM »
do not wait till May 2. I have suffered from the same shit for ten years. You have to get ahead of the problem,if possible. I have found I get the same fat deposit around theneck no matter what drugs I am on. The only way i ever almost got rid of it was on a three year drug holiday. I find when I cut carbs out of my diet the fat deposits dont grow as fast.
I have changed drs twice cause they didnt understand my problem. It is as bad as any sickness from aids. I was unable to go out in public for two years, I looked so grotesque.
Now people look at me cause I am a freak. It used to be the opposite. I am half insane.

Offline Christine

  • Member
  • Posts: 1,069
Re: Slightly different issue - lipohypertrophy
« Reply #9 on: April 06, 2007, 11:28:13 AM »
I agree with the other posters. Talk to the doctor about switching your meds. I do understand the anxiety that comes with that change since you have done so well on the regime. But there are options that don't cause the fat deposits

You want to keep your counts stable, but you also want to have a quality of life that is fulfilling and does not cause self esteem issues.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: Slightly different issue - lipohypertrophy
« Reply #10 on: April 07, 2007, 03:03:21 AM »
Change meds

Sommat like Atripla or Reyataz/Norvir/Truvada.  Should also help with cholesterol (either, though Sustiva noted for raising triglycerides in some people).

- matt
« Last Edit: April 07, 2007, 03:05:12 AM by newt »
"The object is to be a well patient, not a good patient"

 


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