Meds, Mind, Body & Benefits > Lipodystrophy & Metabolic Problems

I think my lipoatrophy is improving

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--- Quote from: GSOgymrat on August 02, 2012, 08:18:53 AM ---Thanks, Ann. CD4=786, %CD4=29, viral load undetectable except for one blip since 2003.

--- End quote ---

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

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!!


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:

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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