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Author Topic: Abdominal lipodystrophy  (Read 3640 times)

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Offline Tamika

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Abdominal lipodystrophy
« on: February 17, 2014, 10:01:27 AM »
I HATE the way I look! I look I'm 6 months pregnant! I've been on Ziagen and Combivir for 10 years, been pos for 18 years. Current Viral load <40 and CD4 count 759, cholesterol 5, HB 11. My doc is reluctant to change the meds as I was resistant to a lot of the meds they have here in SA. What can I do? Does exercise and diet help in treating abdominal lipodystrophy? I've been trying to read articles on the net but it doesn't give me hope at all......any advice? Please?

Offline antobelli

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Re: Abdominal lipodystrophy
« Reply #1 on: February 19, 2014, 11:22:39 PM »
I used to have a huge "beer-belly", so I started to exercise regularly (4x week) and eating better food (4-6 small meals/day). After few months I saw a big improvement on my abdominal area. Now I listen to one of my favorite songs "I am so sexy and I know it".  ;D

Ciao,
Antobelli
 

Online wolfter

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Re: Abdominal lipodystrophy
« Reply #2 on: February 19, 2014, 11:47:56 PM »
Not trying to sound pert, but neither of these situations is indicative of abdominal lipo.  A "beer belly" is the antithesis of this condition. 

wolfie



Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline antobelli

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Re: Abdominal lipodystrophy
« Reply #3 on: February 20, 2014, 01:50:55 PM »
Wolfie..... My co-worker don't know my HIV status and they used to asked me if I am a beer drinker, for that I call it "beer-belly". I still have a small fat tissue on my right side of the abdomen, but it's nothing compering to the "beer-belly" I used to have. Diet and exercise helped me reduce my abdominal lipodystrophy.

antobelli

Offline Ann

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Re: Abdominal lipodystrophy
« Reply #4 on: February 21, 2014, 06:03:43 AM »

 Diet and exercise helped me reduce my abdominal lipodystrophy.


Lipo caused by hiv meds rarely responds to changes in diet an exercise. If only it were that simple!



I HATE the way I look! I look I'm 6 months pregnant! I've been on Ziagen and Combivir for 10 years, been pos for 18 years. Current Viral load <40 and CD4 count 759, cholesterol 5, HB 11. My doc is reluctant to change the meds as I was resistant to a lot of the meds they have here in SA. What can I do? Does exercise and diet help in treating abdominal lipodystrophy? I've been trying to read articles on the net but it doesn't give me hope at all......any advice? Please?

Tamika, it's difficult to give any advice in this situation because 1) we don't know what your resistance profile looks like and 2) I (most of us) don't know what meds are currently available in SA.

While I can probably find the answer to #2 online, you'll have to provide the answer to #1 before it would be any use to know the answer to #2.

All I can say with what details I do know is that you must not have any resistance to the NRTI class of meds, because you are on a combo that only includes NRTI drugs. You're on the individual components of a single-pill formulation called Trizivir and Trizivir consists of three NRTI class drugs.

Trizivir = abacavir + zidovudine + lamivudine

Combivir = zidovudine + lamivudine
Ziagen = abacavir

You may be a candidate for switching to one of the newer meds, such as dolutegravir (brand name Tivicay), but I don't know if it's available yet in SA. Most of the resistance issues from older meds won't make Tivicay unusable for you. Another newer med that you may be able to take, if available, is Isentress.

The med that would most likely be causing your lipo problem is the zidovudine, aka AZT. If you can get off that it might help. I can't recall if you can switch out the Combivir for Truvada when you're taking it with another NRTI - something tells me you can't.

Calling Newt! - I'll send Newt a PM to see if he can't add a few words of wisdom to your thread, Tamika. He knows a lot more about meds than I do, and he knows more about what is available in SA as well.

Ann
Condoms are a girl's best friend

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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 antobelli

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Re: Abdominal lipodystrophy
« Reply #5 on: February 21, 2014, 09:23:41 PM »
Ann, diet and exercise is recommended as a part of lipodystrophy treatment, may not work for everyone, but worked for me. And YES was that simple to change my diet and exercise hard, and after 5 months I saw a huge improvement. My lipodystrophy was caused by HIV meds.

PS: if you don't like or don't care about dieting and exercising that's another story

Antobelli     

Online Miss Philicia

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Re: Abdominal lipodystrophy
« Reply #6 on: February 22, 2014, 09:57:24 AM »
Then it's quite likely you were mis-diagnosed (or self-diagnosed) and you only gained weight, which is not the same as lipodystrophy which involves permanent alteration of mitochondria on the cellular level resulting in visceral fat in the abdomen, not typical fat accumulation on top of the abdomen which, yes of course can be eliminated by diet and exercise just like for any HIV- person. Unfortunately many patients and (probably) some doctors confuse the two.

You've only been HIV+ since 2000. When did you go on HIV meds and which ones were you on when you first started treatment and which meds specifically are you connecting with you case of lipo?
« Last Edit: February 22, 2014, 10:03:47 AM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline antobelli

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Re: Abdominal lipodystrophy
« Reply #7 on: February 22, 2014, 10:13:11 PM »
Miss Philicia, I'm not arguing with you, Ann, or wolfie about lipo. It's true that is hard to get rid of the fat accumulation caused by HIV meds, most of the time have to be remove by surgery.
 I was having the same look like Tamika was referring to, abdominal bloating and on the right side of the abdomen I had a huge fat lump. Diet and exercise helped me improve my look. And I said that I still have small lump of fat on my right side of the abdomen.
I do not see nothing wrong by saying that diet and exercise helped me.
Meds: 2000-2003 combivir, viread, and sustiva; 2003-2013 Invirase, viread, epivir, norvir; 2013 to present stribild.
 
I'm not arguing or trying to be disrespectful, just saying my opinion.
Antobelli

 

Online wolfter

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Re: Abdominal lipodystrophy
« Reply #8 on: February 23, 2014, 01:03:59 AM »
Miss Philicia, I'm not arguing with you, Ann, or wolfie about lipo.

I didn't even realize I was in an argument, but thanks for pointing it out. 

PS: if you don't like or don't care about dieting and exercising that's another story

Antobelli     

passive/aggressive much? 

anyways, good luck with everything.  ;)
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online Jeff G

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Re: Abdominal lipodystrophy
« Reply #9 on: February 23, 2014, 06:31:21 AM »
I have just lost about 20 lbs and I look better for it and the result is some of the effects of lipo are not as noticeable . I have allot of fat that had accumulated on my back and shoulders and its still there but the weight I lost that was not lipo has helped some what in appearance only . Some people have lots of lipo and some not so much and normal weight gain or loss can accentuate it .

I think the fat in my ass ran away from home and now resides in the great north of my back and shoulders .

Offline eric48

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Re: Abdominal lipodystrophy
« Reply #10 on: February 25, 2014, 06:53:16 PM »
I HATE the way I look! I look I'm 6 months pregnant!

Same here... Put on 50lbs! In last 6months... Depression etc.
Considering meds vacation

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Online Miss Philicia

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Re: Abdominal lipodystrophy
« Reply #11 on: February 25, 2014, 08:33:20 PM »
Same here... Put on 50lbs! In last 6months... Depression etc.
Considering meds vacation

Eric

Did you gain weight from depression-related overeating or are you inferring it's med-related lipohypertrophy?

Why would you discontinue all of your HIV medications?
"I’ve slept with enough men to know that I’m not gay"

Offline Tamika

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Re: Abdominal lipodystrophy
« Reply #12 on: February 26, 2014, 03:41:55 AM »
Thank you all for your feedback. I'll ask my doctor for the restance test results as I don't remember which meds I was resistant to. The test was done in 2005.

I went to my doctor yesterday (before reading this thread) and he put me on Glucophage. Asked me to take one pill a day for 4 weeks and see if there are any changes.

I look terrible - honestly, everyone thinks I'm pregnant. I have been exercising but I'm losing weight everywhere else except for the tummy which makes me look even worse.

I'll get the meds I was resistant to and post again. I'll also find out if the suggested meds are available here in SA.

Thank you again for responding.

Offline eric48

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Re: Abdominal lipodystrophy
« Reply #13 on: February 26, 2014, 09:41:40 AM »
I would not want to hijack Tamika's thread, but the cascade is the same

my prescription was 2 lines long, now it is 2 pages long

Of course, as Tamika, I'm on Glucophage

Then, if they find (or when they find) cholesterol, they will put Tamika on Statin (as I do)

And they keep looking at your tummy as if YOU are the problem

Which makes you even more depressed, etc.

So I would like to know from those who have changed or stopped meds if this never ending inflation can be reversed

Hope I am not hijacking

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline mecch

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Re: Abdominal lipodystrophy
« Reply #14 on: February 26, 2014, 09:58:08 AM »
Stopping your HIV medicine is not a solution to lipodystrophy.  Once we are on HIV treatment its pretty much for the long haul.  The only path forward is workarounds. Lipodystrophy is surely a difficult beast. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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Re: Abdominal lipodystrophy
« Reply #15 on: February 26, 2014, 10:04:43 AM »
Stopping your HIV medicine is not a solution to lipodystrophy.  Once we are on HIV treatment its pretty much for the long haul.  The only path forward is workarounds. Lipodystrophy is surely a difficult beast. 

Yes A+ advice .

Offline eric48

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Re: Abdominal lipodystrophy
« Reply #16 on: February 26, 2014, 10:04:56 AM »
Stopping your HIV medicine is not a solution to lipodystrophy.  Once we are on HIV treatment its pretty much for the long haul.  The only path forward is workarounds. Lipodystrophy is surely a difficult beast.

I read somewhere that this is more than 50% cause why people stop treatment, though

Changing is not always possible due to obsolete or stingy regulations

hope this helps Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline mecch

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Re: Abdominal lipodystrophy
« Reply #17 on: February 26, 2014, 10:08:01 AM »
I read somewhere that this is more than 50% cause why people stop treatment, though

Changing is not always possible due to obsolete or stingy regulations

hope this helps Eric

The reasons people make a bad decision are interesting but the decision to stop meds is still regrettable and finally terminal.  Also suffering from all the painful conditions of dying of AIDS must be worse than suffering lipodystrophy.  Have you seen someone suffer and die from untreated HIV?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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Re: Abdominal lipodystrophy
« Reply #18 on: February 26, 2014, 10:08:37 AM »
I read somewhere that this is more than 50% cause why people stop treatment, though

Changing is not always possible due to obsolete or stingy regulations

hope this helps Eric

You are not advocating stopping meds for cosmetic reasons though are you ? 

Offline BT65

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Re: Abdominal lipodystrophy
« Reply #19 on: February 27, 2014, 04:34:57 AM »
When I was put on Crixivan I developed lipo in my gut.  I still have a gut, years after being off Crixivan.  My doctor told me the lipo is not going away.  I try to exercise, and hopefully will get back to more vigorous exercise once my hip heals.  But, even though I hate it, I'm come to accept the fact that it's here to stay.  I would not consider going off meds, thinking it would reverse lipo; first of all, it wouldn't.  Second, I would risk resistance and horrible health consequences.

I also have somewhat of a "turkey" neck.  I was wondering why that happened, then a couple months ago read a story on poz's website written by one of the regular authors.  She stated she had a turkey neck and her doctor was able to get her insurance to agree to pay for removal of that fat.  I would really like to find out how to contact her so I could inquire how her doctor was able to get the insurance to agree to this.  I would love it if that could be removed. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Jeff G

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Re: Abdominal lipodystrophy
« Reply #20 on: February 27, 2014, 08:16:23 AM »
Its worth noting that the fat accumulation or lipo in the core of our bodies can trigger type 2 diabetes if we are prone to it .

That is why its important to focus on the doing what we can as far as exercise and diet so that we change the what can be changed and that is the extra non lipo weight or fat .

Offline eric48

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Re: Abdominal lipodystrophy
« Reply #21 on: February 27, 2014, 09:01:26 AM »
If 'pregnancy' can be solve by healthier food and exercice, then fine

But if healthier food and exercice can not solve the issue (and some people try real hard at it, so let's not discount their efforts) would you still call 'pregnancy' and earlier than expected onset of type 2 diabetes a cosmetic issue ?

Here, there is a big debate about statins, for example. It is reported by statin users that they lose muscle strength, walk less, become more lazy, so to speak, which is the opposite of what you want when trying to prevent CVD

So back to Tamika's question, the only options suggested thus far are:
- exercice more and eat healthier
- 'Caesarean section' (lypo surgery)

Nothing better in stock ?

Hope this helps Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Online Jeff G

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Re: Abdominal lipodystrophy
« Reply #22 on: February 27, 2014, 09:15:42 AM »
If 'pregnancy' can be solve by healthier food and exercice, then fine

But if healthier food and exercice can not solve the issue (and some people try real hard at it, so let's not discount their efforts) would you still call 'pregnancy' and earlier than expected onset of type 2 diabetes a cosmetic issue ?

Here, there is a big debate about statins, for example. It is reported by statin users that they lose muscle strength, walk less, become more lazy, so to speak, which is the opposite of what you want when trying to prevent CVD

So back to Tamika's question, the only options suggested thus far are:
- exercice more and eat healthier
- 'Caesarean section' (lypo surgery)

Nothing better in stock ?

Hope this helps Eric

Of course diabetes is not a cosmetic condition and no has suggested it is .

The diabetes concern I brought up is new to the conversation, before that we were discussing how meds caused lipo and how it made you look and feel .

Lipo is not a valid or sound reason to stop HIV meds ... a med change perhaps if possible is something to consider .   

Offline mecch

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Re: Abdominal lipodystrophy
« Reply #23 on: February 27, 2014, 02:50:53 PM »
If 'pregnancy' can be solve by healthier food and exercice, then fine

But if healthier food and exercice can not solve the issue (and some people try real hard at it, so let's not discount their efforts) would you still call 'pregnancy' and earlier than expected onset of type 2 diabetes a cosmetic issue ?

Here, there is a big debate about statins, for example. It is reported by statin users that they lose muscle strength, walk less, become more lazy, so to speak, which is the opposite of what you want when trying to prevent CVD

So back to Tamika's question, the only options suggested thus far are:
- exercice more and eat healthier
- 'Caesarean section' (lypo surgery)

Nothing better in stock ?

Hope this helps Eric

But you seemed to be saying you might take a vacation from anti-retrovirals out of frustration with lipo....
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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Re: Abdominal lipodystrophy
« Reply #24 on: February 27, 2014, 04:21:35 PM »
The question is: I am 'pregnant' 6 months :-( . What can I do ?

Futile or not, this 'condition' makes a lot of us desperate

See: where did all the wasting go?
http://www.ncbi.nlm.nih.gov/pubmed/22951353

...paradigm shift from HIV as a disease of wasting to one with an increasing prevalence of obesity

Here is a list of 'interventions' mentioned thus far:
- exercise more and eat healthier
- 'Caesarean section' (lypo surgery)
- (HIV) combo change
- treatment vacation
- Sugar/cholesterol medication (Glucophage, statins...)

Any other ideas ? (Egrifta?, Fibers ?, )

Just trying to focus on the original question...

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline mecch

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Re: Abdominal lipodystrophy
« Reply #25 on: February 27, 2014, 06:19:19 PM »
Just saying I have never heard of a "treatment vacation" doing anything for lipo.
Not only will it not reverse lipo, therefore useless as an option, it is dangerous for the immune system... 

The other things on your list seem like routes to explore.

Also, somehow making peace with the lipo that has been established, while working to stop its progression if possible.
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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