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Author Topic: I think my lipoatrophy is improving  (Read 20017 times)

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Offline GSOgymrat

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I think my lipoatrophy is improving
« on: August 05, 2009, 10:25:48 PM »
In 2006 I switched to a more "fat friendly combo": Reyataz, Truvada and Norvir. I was talking to my partner today and we both agree that my legs and arms don't look as veiny as they used to. I still look more veiny than the average person but my legs don't resemble a road map like they did a few years ago. It is taking a long time and is a subtle change but a welcome one.

Also it has been over 3 years since I had PMMA treatment in my face and buttocks. It is holding up well and I have not had any complications.


Offline elf

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Re: I think my lipoatrophy is improving
« Reply #1 on: August 08, 2009, 02:19:27 PM »
Nice to hear that, Ford.

I've been on Combivir+Kaletra for 11 months now, and I haven't noticed any lipoatrophy so far.
I've managed to ''tame'' Kaletra with omega-3 diet, but I've read that Combivir can cause lipoatrophy.
My doctor recommended a switch: from 2daily dosing Combivir/Kaletra to once-a-day dosing Epzicom/Kaletra. But, I'm kinda scared since I've read Epzicom increases the risk of heart attack.  ???
So, I have to choose between Combivir (lipoatrophy) and Epzicom (heart attack).

If I get lipotrophy I will go to Rio (Dr. Serra Clinic that I found about thanks to you) and get it corrected (I have family in Brazil so I have a place to stay).

My doc said that, from his experience, I am less likely to get lipoatrophy because of my endomorph body type/metabolism.



hugs from southern Europe
« Last Edit: August 08, 2009, 02:25:00 PM by elf »
Let's have a Kiki!

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #2 on: August 08, 2009, 07:25:16 PM »
Thanks, Elf.

I was sceptical that I would see any improvement in my arms and legs by switching medications. I'm glad that there appears to be some reversal.

Offline Rev. Moon

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Re: I think my lipoatrophy is improving
« Reply #3 on: August 09, 2009, 12:52:46 AM »
That's great news Mr. Ford, congrats :)

I haven't been around the forums for very long, but (given that you are a bodybuilder) was it very noticeable before? I guess I have this picture in my head of this issue being more evident for those on the average side of fitness (or those with a couple extra pounds). 

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #4 on: August 09, 2009, 07:53:00 AM »
The veins in my arms and legs were very noticeable. However when you workout people tend to think you are "ripped". Nurses at my job used to comment on how easy it would be to draw blood from me but I don't get those comments anymore. Looking at my forearms as I type this they look comparatively normal.

Offline GNYC09

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Re: I think my lipoatrophy is improving
« Reply #5 on: August 09, 2009, 11:10:15 AM »
GSO, glad to hear the news.  What meds were you on before (for some reason I think it was Atripla)?

Offline YaKaMein

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Re: I think my lipoatrophy is improving
« Reply #6 on: August 09, 2009, 11:26:51 PM »
GSO,
Well, you're looking great and feeling fantastic about too. Am happy to hear your news. Keep it up sexy,  :D YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #7 on: August 10, 2009, 07:37:15 AM »
GSO, glad to hear the news.  What meds were you on before (for some reason I think it was Atripla)?

I've been on AZT, 3TC, Hydroxyurea, Viramune, Videx, Zerit, Sustiva, Viread, Kaletra... those are the HIV meds I can think of. Kaletra was the worst-- never had a solid bowel movement and lost 30 lbs.

Online Miss Philicia

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Re: I think my lipoatrophy is improving
« Reply #8 on: August 10, 2009, 11:33:11 AM »
Kaletra was the worst-- never had a solid bowel movement and lost 30 lbs.

I just want to emphasize to the other thread readers that this particular part of Ford's post indicates a wasting issue, not lipoatrophy -- they can occur at the same time, but with wasting you can gain the weight back. 

I'll figure that Ford knows this and that the changes as a reversal in "cabling" (i.e. the effect of lipoatrophy that causes veins to seem to be on the surface of the body) he is separating out.  I guess I'd just be curious as to when you halted Kaletra and gained your baseline weight back?  The only reason I ask, is that my experience is somewhat similar in terms of med history, and of course I've had lipo probably for as long as you have or longer.  I've had some slight reversal with cabling, but I'll emphasize "slight" -- some days it looks better than others, and I just chalk it up to better water retention or something on that day.  I, too, have been on what one could describe similarly as a "fat friendly combo" now since mid-2006.
"I’ve slept with enough men to know that I’m not gay"

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #9 on: August 10, 2009, 12:16:45 PM »
I should have made clear the problem with Kaletra wasn't lipoatrophy it was digestion. When I was on Kaletra my triglycerides stayed at over 1600. I never had a solid bowel movement and there were time that I would take Kaletra and 15 minutes later I had diarrhea and found the solid Kaletra capsules coated in yellow bile in the toilet. When I switched to Reyataz, Truvada and Norvir in 2006 my triglycerides dropped to the 300s, the diarrhea stopped and my weight went back to normal. I would say I was back to normal weight within 6 months. The only negative with this combo is it seems to be affecting my liver: my creatinine and bilirubin are both elevated.

As far as the "cabling" improving it is a subtle change but definitely is better. Like anyone my veins are more pronounced when I workout but when I am relaxed my arms and legs look almost normal. I have noticed that if I don't watch my diet my waistline expands with fat under my abdominal muscles. However if I stick to my diet and exercise routine it goes away.

The reason I created this post was to let people know that, at least for me, switching to a "fat friendly" combo has seemed to improve my lipoatrophy, but not dramatically and certainly not quickly.

Offline mewithu

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Re: I think my lipoatrophy is improving
« Reply #10 on: August 11, 2009, 09:12:01 AM »
I have been worying about kidney disease also since being on reyataz and viread combivir.
My last two DR visits he has pointed that out to me he may have to lose the viread. I'll know more in Sempter when I get the new results. Your seemingly doing fine though.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline newfie_man67

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Re: I think my lipoatrophy is improving
« Reply #11 on: August 17, 2009, 09:58:43 AM »
I switched to reyataz and norvir about 2 years ago. the veiny legs have gone. but now i have too much belly fat...how can i get rid of this?? Is there any sloution ? I have been poz since 1993 and have been thru soooo much with this disease! My but and legs look fine now ...how can i get this  gut to go?
any fitness tips maybe?
Newfie_man
Newfie_man67

Offline bobino

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Re: I think my lipoatrophy is improving
« Reply #12 on: August 18, 2009, 12:54:01 AM »
any fitness tips maybe?


Hmmm . . . maybe we need to start a thread about exercises one can do to mitigate the effects of lipo.  You know, build muscle where it's possible to make the fat loss less noticeable.  I certainly do it for my legs and arms.
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Offline aztecan

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Re: I think my lipoatrophy is improving
« Reply #13 on: August 18, 2009, 01:00:28 AM »
Hey Ford,

Funny you should mention this at this time. When I arrived at AMG this year, I had several people walk up, independently of one another, and mention how much my hump had shrunken.

I was utterly amazed and delighted! ;D ;D ;D

All I can say is switching to Isentress and Truvada probably had something to do with it - and a low-far diet.

HUGS,

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

Offline Inchlingblue

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Re: I think my lipoatrophy is improving
« Reply #14 on: August 25, 2009, 01:07:34 AM »
The only negative with this combo is it seems to be affecting my liver: my creatinine and bilirubin are both elevated.

Creatinine elevations are a sign of kidney damage not liver damage. You should monitor it closely, it's likely due to the tenofovir. If this is caught early it can reverse itself but sometimes entails switching the tenofovir to something else. You should estimate your level of kidney function using the online calculator at www.mdrd.com The links below are an excellent overview on the latest findings with tenofovir and its effect on the kidneys. I would stay away from NSAIDs such as Advil and Aleve and aspirin which can exacerbate kidney issues.

Elevated bilirubin from Reyataz is not considered  to be an indication of liver damage.

from aidsmeds:

Increased bilirubin can also be a sign of liver damage. However, in people who have taken Reyataz in clinical trials, an increase in bilirubin has not been associated with any other signs of liver damage.

LINK:

http://www.hopkins-hivguide.org/q_a/patient/antiretroviral_therapy/antiretroviral_agents/nucleoside_and_nucleotide_reverse_transcriptase_inhibit/tenofovir_and_kidney_function_-_latest_studies.html?contentInstanceId=488399

http://www.catie.ca/tu.nsf
« Last Edit: August 25, 2009, 01:20:27 AM by Inchlingblue »

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #15 on: August 26, 2009, 08:57:56 AM »
You're right, I should have said liver and kidney damage. According to the kidney calculator link I have "Stage 3: Moderate, evaluating and treating complications." Thanks for the info.

Offline Inchlingblue

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Re: I think my lipoatrophy is improving
« Reply #16 on: August 26, 2009, 10:37:16 AM »
You're right, I should have said liver and kidney damage. According to the kidney calculator link I have "Stage 3: Moderate, evaluating and treating complications." Thanks for the info.

I would go more by the number than by that part.

Here is another online calculator for creatinine clearance:

http://www.clinicalculator.com/english/nephrology/cockroft/cca.htm
« Last Edit: August 26, 2009, 02:55:42 PM by Inchlingblue »

Offline Rev. Moon

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Re: I think my lipoatrophy is improving
« Reply #17 on: August 26, 2009, 08:19:31 PM »
Creatinine elevations are a sign of kidney damage not liver damage. You should monitor it closely, it's likely due to the tenofovir.

Inchlingblue, on that note, the article below was posted today on the aidsmap.com website.  Does this study contradict what has been common knowledge about Viread thus far?

Risk of kidney problems similar for tenofovir and alternative drugs.

And this was posted as well. Maybe a separate thread should be created about this?  Just posting here since Ford's kidneys are now the topic :)


Patients taking HIV treatment need to maintain undetectable viral load to protect kidney function
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline Inchlingblue

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Re: I think my lipoatrophy is improving
« Reply #18 on: August 26, 2009, 09:30:06 PM »
Those are very interesting articles, thanks for posting.

Sometimes it can get frustrating since we're dealing with a condition whose treatment is still evolving so it's a challenge to digest what every new study brings to the table relative to what was already known.

I'm still digesting these new tenofovir/kidney findings.

 

Offline Assurbanipal

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Re: I think my lipoatrophy is improving
« Reply #19 on: August 27, 2009, 07:01:55 AM »
Inchlingblue, on that note, the article below was posted today on the aidsmap.com website.  Does this study contradict what has been common knowledge about Viread thus far?

Risk of kidney problems similar for tenofovir and alternative drugs.

And this was posted as well. Maybe a separate thread should be created about this?  Just posting here since Ford's kidneys are now the topic :)


Patients taking HIV treatment need to maintain undetectable viral load to protect kidney function

n.b.  The headline "Risk of kidney problems similar for tenofovir and alternative drugs."  is somewhat misleading especially for those like the OP who are on a combo that includes Norvir.  The study confirmed higher kidney risk if you are on tenofovir and a boosted protease inhibitor.

"When the investigators looked at these results in greater detail, they noticed that patients taking tenofovir with a ritonavir-boosted protease inhibitor had greater declines in kidney function at six (p = 0.01) and 24 months (p = 0.008) than did those taking tenofovir with a non-nucleoside reverse transcriptase inhibitor (NNRTI). By contrast, patients taking an alternative NRTI with a boosted-protease inhibitor had similar kidney function to those taking an alternative NRTI with an NNRTI. "
« Last Edit: August 27, 2009, 07:04:19 AM by Assurbanipal »
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #20 on: August 27, 2009, 09:24:23 AM »
I would go more by the number than by that part.

Here is another online calculator for creatinine clearance:

http://www.clinicalculator.com/english/nephrology/cockroft/cca.htm

That one showed I was well outside normal range too. I'm not sure what I should do at this point except follow up with my doctor. My viral load is undetectable and I don't want to screw that up but I kind of need my kidneys.

Offline Inchlingblue

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Re: I think my lipoatrophy is improving
« Reply #21 on: August 27, 2009, 11:33:04 AM »
I think I might ask Dr. Gallant for his take on these new studies, to see if he can put them into context with previous ones and get his overall opinion.

If I were you I'd ask him for advice for your particular situation, he might have some good suggestions. Even though your doctor will have his valuable input, HIV treatment can be complex sometimes and I trust Gallant's breadth of knowledge. There's a section on his site where only other doctors have access, so they can ask his opinion about things they are not sure about, which is a testament to his expertise.

Remember, kidney damage can be reversed if caught early enough.

Suggestions:

Drinking a lot of water is good, it helps flush out toxins from the kidneys.

As a bodybuilder you probably eat lots of protein and this is not good for the kidneys. Go easy on the protein.

Some statins such as Crestor can affect the kidneys, not sure if you are on it.

Go easy on NSAIDs (Advil, Aleve and aspirin, etc)


LINK TO GALLANT:

http://www.hopkins-hivguide.org/q_a/index.html?categoryId=9352&siteId=7151

LINK TO CATIE (HIV & KIDNEYS):

http://www.catie.ca/tu.nsf
« Last Edit: August 27, 2009, 03:56:57 PM by Inchlingblue »

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #22 on: August 28, 2009, 09:44:22 AM »
Thanks for the tips. I have also read on the bodybuilding forums that bodybuilders have similar creatinine levels to mine and it doesn't appear to be from using supplements. I've read that having high muscle mass and breaking down your muscle tissue and repairing it causes the high levels.

Offline Inchlingblue

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Re: I think my lipoatrophy is improving
« Reply #23 on: August 28, 2009, 11:35:48 AM »
Thanks for the tips. I have also read on the bodybuilding forums that bodybuilders have similar creatinine levels to mine and it doesn't appear to be from using supplements. I've read that having high muscle mass and breaking down your muscle tissue and repairing it causes the high levels.

These things can get confusing, I'm not 100% sure but I think what you are talking about is CPK levels (creatine phosphokinase) which I don't think is the same as creatinine levels. They're related but not the same.

As an aside, one of the few known side effects of Isentress is that a small percentage of people get elevated CPK levels (not creatinine).
« Last Edit: August 28, 2009, 11:40:18 AM by Inchlingblue »

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #24 on: August 28, 2009, 12:05:49 PM »
This is an article I was reading from a bodybuilding website. Several bodybuilders had posted about high creatinine levels. I can't say how accurate it is but this is the discussion I was referring to.

Creatinine
Creatinine is a breakdown product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass).
It is mainly filtered by the kidney, though a small amount is actively secreted. Creatinine is not reabsorbed. If the filtering of the kidney is deficient, blood levels rise. This effect is used as an indicator of renal function.

However, in cases of severe renal dysfunction, the creatinine clearance rate will be overestimated because the active secretion of creatinine will account for a larger fraction of the total creatinine cleared. Men tend to have higher levels of creatinine because they have more skeletal muscle than women.

Creatinine is commonly known as a waste product of muscle or protein metabolism. To this end, its level is a reflection of the body's muscle mass or the amount of protein in the diet. Low levels are sometimes seen in kidney damage, protein starvation, liver disease, or pregnancy.

Elevated levels are sometimes seen in kidney disease due to the fact that a damaged kidney will not remove creatinine from the body as it should. Also, elevated levels are seen with the use of some drugs that could impair kidney filtration. Finally, elevated levels could also be seen with muscle degeneration, a high protein diet, or creatine supplementation.

With respect to creatinine measurements, it's important to note that the amount of creatinine in the blood is regulated by the amount being produced (from protein degradation - muscle or dietary) vs. the amount that's being removed (by the kidney).

Therefore, although creatinine in the blood could be a marker of a damaged kidney's inability to filter creatinine out of the body at a normal rate, it could also be a marker of rapid protein degradation (via muscle damage from weight training or from a high protein intake).

Think of the blood as a sink. If you turn on the faucet at a low rate, the amount of water going into the sink and the amount leaving the sink should balance each other out, leading to a predictable amount of water in the sink at any moment. However, if you partially plug the drain, you'll get more water accumulating in the sink at the same faucet flow rate.

This is similar to kidney dysfunction (thinking of the water as creatinine). However, alternatively, if the drain remains unplugged but you crank up the faucet flow rate, you'll get more water in the sink due to the higher flow. This is similar to a high protein diet.

Since weightlifters are continually breaking down muscle protein (this is a good thing), even in the absence of a high protein diet, blood creatinine concentrations tend to be elevated. Furthermore, add in a higher protein diet and creatinine concentrations in the blood will rise.

Finally, since creatinine is also a breakdown product of creatine, if a weightlifter is taking creatine supplements (which most do), blood creatinine concentrations will also be high. What all of this means is that the faucet is turned up in weightlifters, not that the drain is plugged.

To address the other relevant measure, the nitrogen component of urea, blood urea nitrogen (BUN), is the end product of protein metabolism and its concentration is also influenced by the rate of excretion (as is creatinine). Excessive protein intake, kidney damage, certain drugs, low fluid intake, intestinal bleeding, exercise, or heart failure can cause increases in BUN.



Offline Catman

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Re: I think my lipoatrophy is improving
« Reply #25 on: August 13, 2010, 09:07:02 PM »
I'd have to agree that I have also improved in this matter this year. Since switching to Aptivus, Isentress  but still with Norvir :(, my leg vains have almost disapeared but I don't know if my recent hobby of bike riding has anything to do with it. I have gained like 8 pounds and the only visible veins are on my arms because of freaquent weight lifting with dumbells, but these vains I like. My facial PMMA has also stayed intact after all these years, too. I think I had mine when you also had your first treatment with PMMA, Ford.
Catman

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Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #26 on: August 20, 2010, 08:05:19 PM »
Glad to hear you have noticed improvement. :)

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #27 on: August 02, 2012, 03:09:27 AM »
Yes, the last post on this thread was a year ago but I am raising it from the dead. I was going through some old home videos and found a clip I took in April, 2002 that I had completely forgotten. I don't have a lot of photos from those years but for some reason I wanted to privately document how terrible I looked. At the time of the video my viral load was 69,699, CD4=87, CD4%=7 and I was on Sustiva, Zerit, Videx, Hydroxyurea and Septra. In 2003 I went on Kaletra and although my viral load went undetectable my digestive system could never adjust to it and I lost even more weight.

Here is a still from the video. This was 4 years before I got facial fillers. I may be 10 years older but I look much better at 46 than 36 thanks to better meds and Brazilian plastic.


Offline Ann

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Re: I think my lipoatrophy is improving
« Reply #28 on: August 02, 2012, 03:27:39 AM »
Wow Ford, you've really come a long way. Congratulations!

Just curious, what are your CD4s like today?
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #29 on: August 02, 2012, 08:18:53 AM »
Wow Ford, you've really come a long way. Congratulations!

Just curious, what are your CD4s like today?

Thanks, Ann. CD4=786, %CD4=29, viral load undetectable except for one blip since 2003.

Offline Ann

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Re: I think my lipoatrophy is improving
« Reply #30 on: August 02, 2012, 08:30:16 AM »
Thanks, Ann. CD4=786, %CD4=29, viral load undetectable except for one blip since 2003.

Wow, you really have come a long way, haven't you. And you're hawt besides. Who could want for more? :D
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline lbsmdl

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Re: I think my lipoatrophy is improving
« Reply #31 on: August 07, 2012, 12:45:12 AM »
Good Evening Ford,

This is my very first posting to the forum so I am humbly asking you and other members to PLEASE be very patient with me as I have been going through a very rough time with lipoatrophy- AND I DESPERATELY NEED FRIENDS AND HELP!!! I was diagnosed in 1996. The results of my first labs resulted in my T-cell at 205 and VL @ 5,000. Although my VL was very low, I was very ill with MANY of the typical ARS (i.e., peripheral neuropathy, ongoing dizzy spells, chills, thrush, swollen lymph nodes all over my head, neck, armpits, and groin, etc.). My general practitioner at the time prescribed AZT as a mono-therapy and refused to put me on a combination. I immediately switched to a HIV-Specialist who immediately ordered a biopsy. Unfortunately, I was diagnosed with Stage 3 KS and given a 33% survival rate. My initial chemo treatment failed so my oncologist put me in Interferon as a last resort. With the grace of God, the Interferon worked after a year, and I have since been in remission. My T-cell counts for nearly a decade never cracked 350 but my VL stayed undetectable. My first combination consisted of Combivir & Viramune. I held off of PIs as a last resort but eventually added Crixivan in hopes of increasing my T-cell counts. Crix resulted in kidney stones and several days in the hospital. My doc switch Viramune for Sustiva and changed Crix to Norvir. My regimen then switched to Combivir, Sustiva, and Kaletra, which remained until April 2010. Although I dealt with the diarrhea from Kaletra, I was too afraid to switch my regimen in fear of needing the other drugs in case of emergency. I am now realizing that my nearly long time regimen has now resulted in severe lipo in my arms, legs, butt, hands, and feet. I realize I am being very wordy but needed to give the background to explain my current situation.

I am not certain how lipo has affected others. However, my first bout was in 2000 for nearly six months. It progressed rapidly in my arms and legs. I instantly became afraid of the world and secluded myself from everyone. However, I woke up one day and my road mapped arms and legs were extremely skinny but didn't show any veins. Over the course of the following week, I endured cramp-like pains in my extremities but regained all of the fat that I lost. The same thing happened in 2004. With the exception of those two periods which consisted of nearly 6-9 months of very visible and progressively worsening of lipo, it amazingly and quickly reversed. All other times, I would get very bad burst of headaches across my temples which accompanied pronounced veins typically in my left forearm. This happened randomly and frequently since 1997.

Currently, I have been dealing with progressively worsening lipo since 2009. My arms and legs are bony as hell with HUGE visible veins ALL OVER. My doctor (angel) died Fall of 2010. I have since switched doctors 3 times because of their laisse-faire attitude about my lipo. To them I needed to just get over and appreciate that I am still living. They would tell me I just look like I work out all the time. My regimen was switched to Truvada & Isentress. My lipo continued to rapidly progress. My legs burned all the time. I couldn't deal with being on NRTI so had my regimen switched to Selsentry, Isentress, Prezista and Norvir booster. I have since dropped Isentress from this assuming it was also a source of my continued lipo. My legs burn all the time and my lipo continues to worsen. I have received Sculptra in my cheeks to mitigate beginning losses of facial fat. i work in a very public and visible position in South Florida and have lost all self-confidence to a point where I am afraid of people. i do not leave the house on the weekends. I also now do not wear shorts and will sometimes even wear an arm sleeve to cover my left arm, which is much worse than my right. I am severely depressed, scared, and feel very alone!  All I think about is everyone saying that a recovery in highly unlikely, especially b/c of my age of 41.

Despite this, I hold on to your posts as a lasting hope for improvements. So, where are you now in 2012? Have you continued to progress to near normal status in arms and legs? Did you have any physical symptoms when you endured your bout? Any symptoms experienced during your improvement phase? What advice do you have for me? I really need for others to help lift my spirits and increase my optimism. I apologize to everyone for the VERY LONG post and promise my future posts will be brief. I am EXTREMELY STRESSED, SCARED, and begging others for support and encouraging words! I anxiously await response(s) from you and others! PLEASE HELP ME!!

L[/color]

Offline GSOgymrat

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Re: I think my lipoatrophy is improving
« Reply #32 on: August 07, 2012, 10:48:02 AM »
Hi lbsmdl and welcome to the forum.

You certainly have been through a terrible ordeal with HIV and the related conditions. It takes strength and courage to deal with KS, chemotherapy, lipo and all the medication changes and side effects and I'm glad you are still here and fighting. Listening to your story I could relate to the medication changes, staying with Kaletra despite the constant GI problem for fear you will need the other drugs and the anxiety and despair from all the body changes. It is interesting that you had improvement and worsening of the visibility in your extremities because my lipoatrophy gradually worsened and then as very slowly and very subtly improved.

Addressing your questions, I have had few problems since switching to my current combo of Reyataz, Truvada and Norvir in 2006. My lipids are still a little high but generally under control with Tricor and Lovaza. I don't have any GI issues, pains or anything like that. To be honest I have felt perfectly fine for years.

As far as my lipoatrophy, it is definitely still visible but I think it has improved to the point where I don't look unusual to most people. I didn't expect my arms and legs to improve at all so seeing any improvement is a pleasant surprise. I doubt my lipo will ever completely go away but the most important thing is my appearance doesn't bother me.

As far as advice, what I have tried to do is improve that which I can change and accept the things I can't. I switched to a "lipo friendly" combo, I got PMMA fillers, I watch my diet, I exercise regularly, I have strategies to deal with stress, I dress to accentuate the assets and minimize the flaws. I accept I'm not 30 anymore, I'm bald, my legs are veiny, I have HIV.

My other advice would be to find a counselor with whom you can work on this. You don't have to struggle alone. I completely relate to the fear, anxiety and social withdrawal you talk about and counseling can really help-- it has helped me. Also, when it comes to physical appearance, none of us are objective and often feel we look worse than we actually do.

If you can survive KS and chemotherapy I'm confident you can get a handle on lipo. Keep talking to the people on here. There are a lot of caring people on the forums who have years of experience and knowledge when it come to dealing with HIV and all the associated issues.

This is where I am now:




Offline lbsmdl

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Re: I think my lipoatrophy is improving
« Reply #33 on: August 07, 2012, 09:21:11 PM »
Hey Ford,

Thanks for the quick response. I sincerely appreciate the sharing of your story and the advice you extended. You look great!! I realize pics are difficult to gauge, but I don't recognize lipo at all- not even in your hands. Like you, I work out to stay in shape and maintain muscle mass. However, i question if weight lifting is actually one of the factors in my lipo worsening.

I actually have been seeing a counselor once a week for the last nine months. Sharing my fears, anger, concerns, and despair with her is one of the few things that keep me going. My wife and stepsons also keep my spirits up. Although the kids don't know of my status, they have never made a comment about the unsightly and very visible veins in my arms and legs. To the youngest, he just thinks his 'papa' works out a lot. However, my veins are not "work out" veins as they are much more prominent and widespread. As badly as I want a complete reversal, I have grudgingly relegated myself to accept that looking normal may never occur in this lifetime again. Still, my cry today is for the progression to just STOP. Most of my despair is that the lipo continues to worsen. My legs and the soles of my feet just burn and burn. When this happens, my lipo is inflamed all over. I continue to see new veins come to the surface of my hands, forearms, thighs, legs, and feet. My face also tingles all the time. For me, the hurtful part is that I, nor anyone else, can do anything about stopping the progression. Helplessly seeing the continued loss of subcutaneous fat just burn IS WHAT DESTROYS ME!!

I have learned to be a fighter since my diagnosis and chemo-treatment in 1996. Despite a few lesion on the outside, KS had primarily attacked my internal organs, lungs, and lymphatic system. Although I knocked on death's door, I was able to hide my status b/c it was internal. Lipo is all external and in 2012 has now become the "external KS" that my insides 16 years ago. In many ways, I view this as a "scarlett letter A(IDS)" for the world so see!!

As I mentioned, my career requires me to be in the public eye and deal with LOTS of people all day long, every day. I don't know if I will ever be able to where short sleeve shirts to work ever again without all of the staring, sneering, questions, wondering, and blatant/subtle ridiculing. I keep my office freezing cold to constrict my veins. Overall, I am scared to death and very tired. I pray to God everyday to continue to provide me with courage, strength, and patience in hopes that I too will experience improvements the way you have.

Ford, thank you again for extending your support on this forum. I def plan to stay in touch as I direly need friends that understand the struggle! You look amazing and I am happy for you and encouraged by your lipo improvements!  :-)

 


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