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Author Topic: Poztexguy's abdominal lipodystrophy  (Read 372 times)

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Offline poztexguy

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Poztexguy's abdominal lipodystrophy
« on: March 26, 2014, 11:03:38 PM »
Hi, my first time posting and I hope this is the right forum.  I've been positive since 1988 and my viral load is undetectable, t-cells over 500.  I have abdominal lipodystrophy and just diagnosed with Type 2 diabetes.  My doctor prescribed Metformin 500 mg twice daily with food.  I've been on Kaletra and Combivir for 15 years and I'm wondering if I should change meds now due to the diabetes diagnosis.  Also, I wonder if Metformin was the right drug to prescribe with the Kaletra.  Does anyone else have this problem and can they share their experience with me as to what I should do.  I live in a rural area and health care providers here are not that knowledgeable in HIV issues.  I would appreciate any advice or suggestions.  Thanks!

Offline buginme2

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Re: Poztexguy's abdominal lipodystrophy
« Reply #1 on: March 28, 2014, 04:57:19 PM »
Hi, my first time posting and I hope this is the right forum.  I've been positive since 1988 and my viral load is undetectable, t-cells over 500.  I have abdominal lipodystrophy and just diagnosed with Type 2 diabetes.  My doctor prescribed Metformin 500 mg twice daily with food.  I've been on Kaletra and Combivir for 15 years and I'm wondering if I should change meds now due to the diabetes diagnosis.  Also, I wonder if Metformin was the right drug to prescribe with the Kaletra.  Does anyone else have this problem and can they share their experience with me as to what I should do.  I live in a rural area and health care providers here are not that knowledgeable in HIV issues.  I would appreciate any advice or suggestions.  Thanks!

Welcome

My question is in the year 2014 why is someone with lipodystrophy and metabolic issues still taking Combivir and Kaletra? 
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Offline poztexguy

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Re: Poztexguy's abdominal lipodystrophy
« Reply #2 on: March 30, 2014, 01:32:35 AM »
Welcome

My question is in the year 2014 why is someone with lipodystrophy and metabolic issues still taking Combivir and Kaletra? 

Could you please tell me what other options I have.  I don't know where to turn.  My physician says I should stay on the Kaletra and Combivir until it stops working.  The Metformin is kicking my butt and I am having a hard time adjusting to it but my blood sugar has come down from the 200s to the 140s.  I really would appreciate any suggestions.  Thanks for listening.

Offline mecch

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Re: Poztexguy's abdominal lipodystrophy
« Reply #3 on: March 30, 2014, 07:33:42 AM »
Poztexguy, are you limited to one doctor to treat your HIV?  1 combo for 15 years and you have doubts and questions - why can't you go seeking some other opinion?
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline pozniceguy

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Re: Poztexguy's abdominal lipodystrophy
« Reply #4 on: March 30, 2014, 11:30:13 PM »
have  had the  Lipo since  early 90s  only thing  that helped  was  Egrifta  (  which has a  tendency  to  aggravate  diabetes if you are  prone to that)   had to  stop  the  Egrifta  fora  few  months  Lipo  came  back  within a short  time....     now  Egrifta is on backorder til  June   so  expecting  Lipo to really  bloom again.. lipo =  32 w  to  34  in 6 weeks  cant imagine what will be over the  next 8...

Nick

P.S   drop the  metaformin  not a good  choice with  other  HIV Meds   tried that  and  got terrible Kidney  problems
« Last Edit: March 30, 2014, 11:32:21 PM by pozniceguy »
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Offline poztexguy

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Re: Poztexguy's abdominal lipodystrophy
« Reply #5 on: April 03, 2014, 04:18:46 AM »
I asked my physician for Egrifta and he felt is was a cosmetic issue and not a medical one and declined to give me a prescription.  I've pretty much made up my mind to find another doctor.  I am ready to switch my meds but must admit I'm a little anxious about the side effects.  Kaletra and Combivir were my salvage therapy after I failed all the other drug regimens.  Kaletra was still in clinical trials and I got on the expanded access program.  I really feel that it saved my life at the time but that it has run its course and time for a change especially with the Diabetes diagnosis.  I always second guess myself and I needed to hear from others in similar situations that it would be a good choice.  I thank all of you for taking the time to hear me out and offering good advice.

Dan in Texas

Online Miss Philicia

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Re: Poztexguy's abdominal lipodystrophy
« Reply #6 on: April 03, 2014, 08:27:13 AM »
Dan, both you (as the patient) and your doctor need to keep up on drug development. Kaletra may have been "salvage therapy" when you went on a clinical trial but there are almost a dozen other HIV medications including two totally new classes of drugs that have come out in the past 15 years.

When a doctor says that an HIV regimen "is working" for a patient it should not just be measured by viral suppression but also take into consideration side effects. For example, if a drug is causing erectile dysfunction, or high blood pressure etc. is it really "working"? Of course not.

For some patients the class of protease inhibitors raises glucose over the long term which in turn can cause diabetes. As well they can cause metabolic dysfunctions with your triglycerides and cholesterol levels which over the long term can result in physical body shape changes, hence your issues with lipodystrophy.

I'm not going to tell you what drug regimen is best for you to switch to because I'm not your doctor, and don't know what medications your geno/phenotype tests show you are resistant to, but I somehow doubt that you are resistant to the new class of integrate inhibitors which appeared first with Isentress in 2007. IMO ideally he should have switched you to such a regimen that many years ago, or earlier if you would have qualified for a clinical trial.

Perhaps you should consider obtaining a second opinion from an infectious disease specialist.
"Iíve slept with enough men to know that Iím not gay"

Offline AusShep

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Re: Poztexguy's abdominal lipodystrophy
« Reply #7 on: April 03, 2014, 03:04:27 PM »
I agree with Miss P, it's time to change. 

Is there an ID doctor in a nearby large city your doctor can confer with, or you can go to for a new drug regimen recommendation? 

No idea what rural part of TX you're in, but if you put the nearest large city or two you can probably get some recommendations from other users.

Converted:      11/1994

Offline poztexguy

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Re: Poztexguy's abdominal lipodystrophy
« Reply #8 on: April 05, 2014, 12:00:16 AM »
You are absolutely right.  I must shoulder some of the blame for not keeping up with the new drug regimens and not switching sooner.  The doctor I was seeing was an Infectious Disease doctor and was suppose to be one of the best.  I have consulted other HIV+ patients who have recommended another ID doctor and I have an appointment with him next week.  I live in the Texas Panhandle and have to travel to Amarillo for my HIV/AIDs (AIDS diagnosis in 1994) care.  At this point I am willing to travel to Dallas or Houston for better health care.  Does anyone know of any drug regimens that do not cause lipodystrophy?  Hopefully my new doctor will know but just in case he doesn't, any suggestions?  I'm convinced Ritonavir (Norvir) is the culprit behind the lipodystrophy and will refuse any drug combo that includes that drug.  The AZT/3TC (Combivir) is questionable.  I've been on AZT off and on for over 20 years now.  I remember taking AZT as monotherapy.  Wow, I've really gone a tirade here.  I'll close for now and once again say thank you for all your comments and suggestions.  I'm glad I found this forum. 

Online Miss Philicia

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Re: Poztexguy's abdominal lipodystrophy
« Reply #9 on: April 05, 2014, 08:27:07 AM »
poztexguy:

This link will show you the "preferred regimen list" which is currently prescribed by the National Institutes of Health. This is a good starting point, however there are a few things that have come out in the past couple of years that are not on the "preferred" list that would likely also be considered by any worthwhile doctor.

As far as what is causing what in your body shape changes -- Norvir has a bad reputation from back in the 90's, but in its current use as what is called a "booster" the milligram amount used is so small as to be hardly significant.

Read this about Kaletra: http://www.aidsmeds.com/archive/Kaletra_1559.shtml

I think it's obvious that your diabetic issues were caused by being on this medication for too long.

Read this about Combivir: http://www.aidsmeds.com/archive/Combivir_1083.shtml

My guess is any lipo issues came from that.

Now going back to the NIH list, you will see that the standard currently is to combine a "main" drug in one of three classes (NNRTI, PI, INSTI) with a two-part drug from the NRTI class -- this is still the basic thinking of the regimen you were on, it's just the items you were taking were very out-dated. So for your NRTI med you swap out the Combivir for either Truvada or Epivir (take care with Epivir however as you must first be given a test to analyze whether or not your body is allergic to the Ziagen contained in the med).

Then it's just a question of what to combine those with -- personally I would exclude from my choices, based on possible side effects, the Atripla and Reyataz options. This leaves Prezista, Tivicay, Isentress and Stribild.

NOTE: have you always had an undetectable viral load since those tests became available ~1997? If not, have you ever had a geno/phenotype resistance test performed?
"Iíve slept with enough men to know that Iím not gay"

Offline Ann

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Re: Poztexguy's abdominal lipodystrophy
« Reply #10 on: April 05, 2014, 08:56:33 AM »
Hi Guy. Welcome to the forums.

I've rather belatedly split your posts out of the thread where you originally posted and put them and the replies you've had into your own thread. I should have done it when you first posted, so I apologise for my tardiness.

I've done this because you and the OP of the other thread both deserve the individual attention, as we all do at times.

For what it's worth, I'm on Prezista, Norvir and Truvada since July 2012 and I like it. It's three pills, once a day, taken with at least a small snack.

I've been putting on a bit of weight recently but I think that it's down to age (over 50), diet and sitting in front of the computer for too many hours each day, rather than the meds. The meds might be helping tip the scales (teehee) a wee bit, but I don't think they're a major contributing factor. My lipids etc are all in normal ranges.

I hope you manage to get off that old combo. Most doctors haven't been using Combivir for years now, same with Kaletra. Totally "old school" these days. Good luck and be sure to keep us posted! :)
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Offline poztexguy

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Re: Poztexguy's abdominal lipodystrophy
« Reply #11 on: April 10, 2014, 12:13:01 AM »
You guys have been great.  After much research, Miss P is right.  It wasn't the Norvir causing my lipo issues but the Combivir.  So I am willing to give Norvir another shot but I think I'll pass on the Combivir or anything with AZT.  This diabetes diagnosis really had me down but thanks to everyone's outpouring of support I am dealing with it much better now.  Thank you Miss Ann for your kindness and no need to apologize for anything.  A friend of mine was hospitalized over the weekend with pneumonia so I am a little tardy responding to your posts.  He's doing better and out of ICU so I can get back to my medical issues.  I guess the first thing my new doctor will do is a drug resistance test to see what drugs I can take.  I'll keep you posted on my progress and let you know what happens.  Thanks again everyone.

Dan

 


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