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Author Topic: Loss of fat in feet and legs in less than one year...Sustiva maybe?  (Read 9827 times)

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Offline jm1953

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  • Posts: 295
Sustiva has been a part of my drug cocktail for about ten years.   In 2008 my doctor switched everything out to Prezista, Norvir, Emtriva and kept the Sustiva.   I haven't been  on a PI since 2000.  I have had facial wasting since 2003 when I began Sculptra treatments, still ongoing.  But legs and feet seemed ok.  But since this switch, in particular the past year, I've lost almost all the fat on the bottom of my feet, and my legs are much thinner with the signature protruding veins.  I have been reading in research that Sustiva is now suspected like AZT, Zerit, and some of the PI's to cause lipodystrophy.  Wondering if the Sustiva is responsible for all this fat loss.  Also I've read that combining an NRTI with a PI is a recipe for lipodystrophy.  Meaning I have everything working against me.

My numbers are decent, and no viral load, but I talked to my doctor about possibly switching me out of Isentress and some of the newer meds that don't cause lipo.  We took blood to get a baseline where I'm currently at to see what to switch to, although he said the meds I'm on have really the least amount of side effects of the many out there.   Also he said lipodystrophy, speaking now about the legs and feet is hard to reverse and takes much time, but that there are some new medications out I think he said in the experimental stage to help which he may try on me once he gets more information.

I am a long termer 23 years, and in my 50's so I suppose this has something to do with it.  Just wondering anyone else having this experience taking Sustiva and/or a PI and NRTI together. 

Thanks,

JM
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline aztecan

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  • Posts: 5,530
  • 36 years positive, 64 years a pain in the butt
Re: Loss of fat in feet and legs in less than one year...Sustiva maybe?
« Reply #1 on: February 04, 2011, 11:00:54 pm »
Hmm, since I took Sustiva for only two months, I am not a good example.

I do have the lipoatrophy on the bottom of my feet and my legs. I also have the lipohypertrophy in the form of the gut from hell and a humpette on my back, not to mention the chipmunk cheeks and bizarre lumps on the back of mu head.

Mine was most likely caused by a combo including a PI (crixivan) and two nukes, AZT and Epivir.

I switched to Truvada and Isentress a while back. I think it is going on two years. To date, I have not seen significant improvement in the lipoatrophy nor the lipohypertrophy.

I don't know if it will ever improve.

I wish I could be the bearer of better news.

HUGS,

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

Offline jm1953

  • Member
  • Posts: 295
Re: Loss of fat in feet and legs in less than one year...Sustiva maybe?
« Reply #2 on: February 05, 2011, 09:35:51 pm »
Thanks Mark for your timely response.  I always appreciate your posts and learn a lot from them. 

It sounds like the Isentress and Truvada combination has really helped reduce your lipodystrophy.  I'm really happy to hear that.  You seem to have a pretty upbeat attitude about your condition, a standard I wish I could reach.  I've learned to take things a day at a time, but it gets tiring as the list of things going wrong seems to escalate by the month.

At any rate, I will suggest this combination to my doctor, although he is not very keen on prescribing anything with Viread in it because of kidney or liver complications, which I can't remember.  But at this point, I'm willing to take that risk.  It would be a lot easier cocktail to adhere compared to what I'm on now as well.

Thanks as always for your help.

Hugs back,

Jeff
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline deibster

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  • Posts: 159
Re: Loss of fat in feet and legs in less than one year...Sustiva maybe?
« Reply #3 on: March 03, 2011, 07:12:23 pm »
hi Jeff,
I have severe lipoatrophy on my arms and legs, they bruise and bleed very easily. I was on Zerit for about 4 years. Now, I'm on 3 NRTIs (Viread & Epzicom, a combo pill) and 2 PIs, Kaletra, a combo pilll. My doc seemed to indicate that all PIs can cause "Lipo" problems. My CD4 is over 800 and VL undetectable. We didn't change my regimen because I was going on a lengthy trip.  Now, we are discussing stopping the PIs and putting me on an integration inhibitor. I think he will also change the the Viread because I'm starting to have kidney function problems, after 6 years on it. I don't know if he will change the Epzicom or leave it the same. Let us know how it goes. Hugs, deibster
« Last Edit: March 03, 2011, 07:17:24 pm by deibster »
Poz since Dec 1992. Meds since 1995. Disability since 2005. Constantly fighting the Lipodystrophy 'beer gut.'

Prezista/Norvir, Epzicom, Cytomel, Prevacid, Coumadin, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, Flomax, Allegra180, Nasacort, Centrum, Flax Oil, Fish Oil

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: Loss of fat in feet and legs in less than one year...Sustiva maybe?
« Reply #4 on: March 03, 2011, 08:57:51 pm »

I am a long termer 23 years, and in my 50's so I suppose this has something to do with it.  

Thanks,
JM


I've often thought the same thing here !  I have also lost quite a lot of padding in the bottoms of my feet, but not so in the legs, or other places.  It's noticible in the feet.

I am also LTS with 25 years of HIV, and 59 years of age.  The only regimen, for all general purposes, that I've ever been on are Viramune,( non-nuke) and Epzicom( Epivir and Ziagen-Nukes). I was also on Zerit, for a little over a month, and Trizivir, for just a little over a month.

I started those in October of 03, but started noticing the loss of padding in the feet, about 3 or 4 years ago.


Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

 


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