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Author Topic: Feel like my legs are losing muscle....  (Read 6613 times)

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Offline redbull

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Feel like my legs are losing muscle....
« on: August 19, 2009, 06:00:37 PM »
Throughout my life I have always had strong muscular legs...always being complimented on them.  I was diagnosed end of may.  Came down with thrush in my esophagus but didnt know thats what it was for about 2 1/2 months.  I could barely eat,  I lost about 15-20 lbs.  My #'s are really bad....

finally on fluconazol and did a scope.  Everything ok for right now...should start atripla in two weeks.  Eating pretty good now...especially after being on prednisone for a drug reaction,  I have been eating everything in sight!!!

But I have noticed my legs feel weak and smaller than usual.  I put on a pair of workout shorts that were normally tight on my quads and they are so loose now.  I read about lipodystrophy all the time on here but I thought it pertained to meds and stuff....

I know not eating hardly will burn up my muscle mass faster than fat but this is ridiculous.  I have just started back to the gym the other day and started doing squats.  I feel a little better but hope to get my self back to normal....you think its just the not eating or something else might be going on?
If you wish to see the best in others, show the best of yourself.

5/20/09  tested poz
6/2/09  CD4-94    VL-380,000
8/09   Allergic reaction to bactrim
9/09/09  started Atripla
5/10    cd4 315  vl undetectable
3/11    cd4 400  undetectable
6/11.   Cd4 520. Undetectable
12/11. Cd4 450. Undetectable
6/12.   Cd4 600. UD
2/13.   Cd4 425. UD

Online Miss Philicia

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Re: Feel like my legs are losing muscle....
« Reply #1 on: August 19, 2009, 06:08:28 PM »
It's not eating.  Losing weight and body shape changes from lipo issues are separate issues that, for some reason, people seem to conflate. 
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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Re: Feel like my legs are losing muscle....
« Reply #2 on: August 19, 2009, 08:15:54 PM »
Not eating AND having a huge viral load -- you can lose a lot of weight really fast.  But the weight comes back after a while on the meds for most people.

BTW, not to harp on it, but did you talk to your doctor about that study that showed better results when you start HAART even before all the OI's are cleared up?

Here's a discussion of the study and links http://forums.poz.com/index.php?topic=27167.0

**** Edited to add link
« Last Edit: August 19, 2009, 08:20:23 PM 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 redbull

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Re: Feel like my legs are losing muscle....
« Reply #3 on: August 19, 2009, 09:07:50 PM »
thats an interesting article...i am supposed to go back on the 27th...if she deffers it again I am going to bring it up...I am tired of waiting,   I just wanna get it over with.  she says if my rash is cleared up by then,  which it already is she will start me on it.  I understand about the IRIS condition but i was diagnosed in may,  its almost september!!!  Dam!!  Its almost like I feel like they are waiting for me to get something else!!! 

I am an impatient person anyway...had a good workout today but feeling kinda dizzy...my blood pressure has been up a little lately, not sure whats going on.

If you wish to see the best in others, show the best of yourself.

5/20/09  tested poz
6/2/09  CD4-94    VL-380,000
8/09   Allergic reaction to bactrim
9/09/09  started Atripla
5/10    cd4 315  vl undetectable
3/11    cd4 400  undetectable
6/11.   Cd4 520. Undetectable
12/11. Cd4 450. Undetectable
6/12.   Cd4 600. UD
2/13.   Cd4 425. UD

Offline Inchlingblue

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Re: Feel like my legs are losing muscle....
« Reply #4 on: August 19, 2009, 09:12:40 PM »
It's not eating.  Losing weight and body shape changes from lipo issues are separate issues that, for some reason, people seem to conflate.  

It's not that clear cut, with all due respect. Depends what you mean when using the shorthand word "lipo." Things like the buffalo hump and visceral fat belly are due to some of the meds but lipoatrophy at least to a certain degree can happen with just HIV.

I have not lost any weight and started treatment very recently with decent numbers (about 400 CD4s and 7k viral load) but I have definitely noticed that my legs are skinnier and my butt is not quite as round, it is somewhat, I hate to say it: flatter. I also notice slight loss of fat on my cheeks (face). I still look fine overall but I know my body. These changes are not due to just normal aging, they happened too fast for that. It's not a figment of my imagination and because there has been no loss of weight and I was not yet on meds when it happened, I know that my slight lipoatrophy is due mainly to the HIV and probably also partly to normal aging.

What I'm hoping is that it won't get much worse, since I've started meds and have not had any OIs and live a very healthy lifestyle overall.

 
assurbanipal: I also hate to harp on it...redbull has had two previous threads, one of which I included that article (or one just like it) and both of which I urged him to insist with his doctor to start the meds........

redbull: you seem like such a nice guy, very easygoing and kind, I don't want to alarm you but I think you're playing with fire not starting meds.....if it were me I would have thrown a Shirley Maclaine Terms of Endearment fit on her ass...is she an HIV specialist with experience and a large practice?
« Last Edit: August 19, 2009, 09:27:31 PM by Inchlingblue »

Offline mecch

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  • red pill? or blue pill?
Re: Feel like my legs are losing muscle....
« Reply #5 on: August 19, 2009, 09:32:57 PM »
Last summer I had huge viral loads in the millions. I gradually slowed down over two months and also got weak and really skinny. I was tired, otherwise i felt ok. Just tired.
Then I started HAART.
As the HIV levels plummeted, my weight stabelised. By Xmas I would say I was normal. Then this spring and summer Id say I put on more weight than ever in my life.  My strength is back to normal, but maybe not endurance.
I bet as your health stablises you'll see you'll go back to your set point, give or take a few.  Its really reassuring when it happens!
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Online Miss Philicia

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Re: Feel like my legs are losing muscle....
« Reply #6 on: August 19, 2009, 10:25:15 PM »
To your first point I should have stated I was referring to lipoagrophy, not lipohypertrophy.  That should have been evident from the OP's line of questioning.  I was also going from his first post on this forum in which he mentioned having had pneumonia, and it's very normal to lose weight from this, along with thrush that made it painful to eat.

These changes are not due to just normal aging, they happened too fast for that. It's not a figment of my imagination and because there has been no loss of weight and I was not yet on meds when it happened, I know that my slight lipoatrophy is due mainly to the HIV and probably also partly to normal aging.

And what is your age again?  Any male siblings that are 4 years or older or more?  How did you fathers face change at a certain age?  The reason I ask this is that both my older brother and father lost fat in their face at a certain age.  Now, it's easy for me personally to separate my lipoatrophy issues from them as mine began at the age of 32, not my current age of 44, but if I were to have had my lipo issues began at a more advance age it would have been harder to separate all of this out from age or HIV/HIV meds, etc., at least at first before it was more severe and obvious.  I'd assume that this is often hard for any HIV patients that are diagnosed and on treatment until their later years.  I'm not trying to minimize what anyone is seeing in their own body, but just trying to provide some useful context.

But back to redbull, I feel confidant in thinking that what he's experiencing is weight loss from having 94 cd4s, a high viral load, and two OI's.  If I'm correct then he should gain the weight back over time and has little to worry about.

I also agree that I find it worrying that redbull's physician has not initiated HIV treatment three months since testing positive with his lab numbers.
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Feel like my legs are losing muscle....
« Reply #7 on: August 19, 2009, 10:44:29 PM »
thats an interesting article...i am supposed to go back on the 27th...if she deffers it again I am going to bring it up...I am tired of waiting,   I just wanna get it over with.  she says if my rash is cleared up by then,  which it already is she will start me on it.  I understand about the IRIS condition but i was diagnosed in may,  its almost september!!!  Dam!!  Its almost like I feel like they are waiting for me to get something else!!! 

I am an impatient person anyway...had a good workout today but feeling kinda dizzy...my blood pressure has been up a little lately, not sure whats going on.



Steroids can increase blood pressure.

It's yet another example of how addressing the OI's causes additional problems -- I think it is time for you to address the underlying cause by starting HAART.



As Inchling pointed out, he and I ganged up on you a little bit in your prior thread about starting meds -- not trying to be obnoxious, but we are concerned for you. 

Right now you have next to no immune system and are not protected from lots of bugs in the environment.  It takes a while after you start HAART to get your immune system back.  In your shoes not sure I'd be hanging out at the gym, unless yours features a lot of sanitizer around the equipment.

You know, like you I was diagnosed late, when I already had AIDS.  As I read and learned more about HIV I focused a lot on what a late diagnosis means.  Frankly the news is not bad once you get past the first year.  But that first year while you are trying to get on meds and get your immune system back is a danger zone; not everyone makes it through.  So please, take care of yourself -- and talk to your doctor about starting meds and addressing the underlying issues.

Sincerely
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 Rev. Moon

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  • Smart ass faggot ©
Re: Feel like my legs are losing muscle....
« Reply #8 on: August 19, 2009, 11:01:13 PM »

But back to redbull, I feel confidant in thinking that what he's experiencing is weight loss from having 94 cd4s, a high viral load, and two OI's.  If I'm correct then he should gain the weight back over time and has little to worry about.

I also agree that I find it worrying that redbull's physician has not initiated HIV treatment three months since testing positive with his lab numbers.

I think that Miss P.'s point is very valid; I believe that we will find the main/true reason for the weight loss within the context of what Redbull has experienced in the past few months.  I lost about 14 pounds in less than three weeks when I seroconverted (just drinking water made me want to puke, forget eating); I can only imagine what he went through.

And I will have to agree with everyone on the fact that Red's doctor should no lo longer delay his treatment.  I wonder what kind of rationale he/she is presenting to him.  At this moment he really needs to re-build his immune system.
"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: Feel like my legs are losing muscle....
« Reply #9 on: August 20, 2009, 02:01:32 AM »
It's possible HIV by itself can cause some lipoatrophy, especially in the face and extremities and butt.  At this point it's anecdotal since there's no hard data to either prove or disprove this.

Redbull didn't say he had pneumonia by the way, he said a friend of his did.

Mecch: I'm curious, based on what you said having lost all that weight, now that you gained it back, are your legs, ass and face back to where they were?

Miss P: I typed up a response to your questions but erased it because I didn't want to hog this thread with boring details about my mild lipo.
« Last Edit: August 20, 2009, 02:22:00 AM by Inchlingblue »

Offline skeebo1969

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Re: Feel like my legs are losing muscle....
« Reply #10 on: August 20, 2009, 03:42:52 AM »



   I might be missing something and of course I am too lazy to look back at your prior post, but am I reading it correctly that your Cd4's are 94?  If so why hasn't your doctor got you on some antivirals?

   I know before I started meds my Cd4's were 113.  I was rail thin, more than I usually am that is, and always lethargic.  As soon as I started the meds my Cd4's started rebounding very quickly.  During this time I weighed more than I ever have and the weight was evenly distributed like it should be.  Right now my Cd4's are at 1100+ and this just after being on meds for a little over 3 years.  This even coming after switching meds and having my numbers plummet to 210.

   While for a time there I put a lot of weight on but it fluctuated greatly.  From about 120-160 pounds often....  This has always been the norm for me though throughout my life though.  One thing the others haven't mentioned, are you getting enough rest?  Seems as though you are going through a very stressful time and not getting the proper sleep also can hinder weight gain.

   For me so, far I have not had any side effects such as lipo from Atripla, from either the previous or the current time that i have been on it. 

  I did go through severe wasting in the beginning.... perhaps it's that.
I despise the song Love is in the Air, you should too.

Offline redbull

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Re: Feel like my legs are losing muscle....
« Reply #11 on: August 20, 2009, 08:01:40 AM »
I have talked to my dr about starting atripla,  she seems to be a believer in the IRIS method where if you are in the middle of an OI that starting meds could make it worse.  She was going to start me on them last week but I had an allergic reaction to bactrim and broke out all over.  She scheduled me to come back in two weeks and she said if the rash is gone she will put me on meds immediately. 

She is an HIV specialist dr here in town and is part of the IDC  team here.  I like here but have to admit I am not sure why we are waiting either, but my friend that had pcp;she was his dr and she did the same thing with him.  Got him better and then started meds. 

I guess different dr's have different ways and such but I will be honest that I am getting extremely frustrated and aggravated with the delay.  If she doesnt start me on them this next visit next week I think I will change dr's and maybe even IDC offices that I go to and go to a bigger city nearby.

I do want to say to those of you that have given me advice how much I appreciate it and I do listen to you.  I do feel my #'s are low and it is important for me to be on meds but I guess since I feel pretty good overall now and have been working out,  and the dr says I am in good shape I havent felt so desparate about it yet. 

But once again,  after reading all of your advice if she doesnt put me on them next week when I go I will have to go to a different dr cuz I do feel its important and I dont need to wait any longer.
If you wish to see the best in others, show the best of yourself.

5/20/09  tested poz
6/2/09  CD4-94    VL-380,000
8/09   Allergic reaction to bactrim
9/09/09  started Atripla
5/10    cd4 315  vl undetectable
3/11    cd4 400  undetectable
6/11.   Cd4 520. Undetectable
12/11. Cd4 450. Undetectable
6/12.   Cd4 600. UD
2/13.   Cd4 425. UD

Offline sharkdiver

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Re: Feel like my legs are losing muscle....
« Reply #12 on: August 20, 2009, 10:01:37 AM »
Of course you're feeling weak and probably lost some muscle, you were seriously ill.

Keep focusing on getting healthy and questioning your doctor is always a good thing.


Offline Inchlingblue

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Re: Feel like my legs are losing muscle....
« Reply #13 on: August 20, 2009, 10:48:38 AM »
I have talked to my dr about starting atripla,  she seems to be a believer in the IRIS method where if you are in the middle of an OI that starting meds could make it worse.  She was going to start me on them last week but I had an allergic reaction to bactrim and broke out all over.  She scheduled me to come back in two weeks and she said if the rash is gone she will put me on meds immediately.  

 

If I were you I'd print out the article about the Sanford University study and show it to her. Science is always evolving and her approach is what used to be the norm but new findings change protocols when it comes to treatment.

Have you already had a resistance test done to see what meds you can take? I know you said she wants to put you on Atripla.
« Last Edit: August 20, 2009, 11:08:00 AM by Inchlingblue »

Offline redbull

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Re: Feel like my legs are losing muscle....
« Reply #14 on: August 20, 2009, 01:58:12 PM »
yea man...ive done everything and am good to go,  just waiting for her to say the word its ok...I understand her point of view but I am gonna make a copy of that article and take it in with me next week.  I am tired of wating around while my #'s are probably getting even worse.

If you wish to see the best in others, show the best of yourself.

5/20/09  tested poz
6/2/09  CD4-94    VL-380,000
8/09   Allergic reaction to bactrim
9/09/09  started Atripla
5/10    cd4 315  vl undetectable
3/11    cd4 400  undetectable
6/11.   Cd4 520. Undetectable
12/11. Cd4 450. Undetectable
6/12.   Cd4 600. UD
2/13.   Cd4 425. UD

Offline David_CA

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  • Posts: 3,246
  • Joined: March 2006
Re: Feel like my legs are losing muscle....
« Reply #15 on: August 21, 2009, 06:58:01 PM »
Hi Red,

Personally, I'd have started meds long before now.  Look at my sig. line below.  I had CD4's in the upper 200's and a VL not nearly as high as yours and still got a really bad case of PCP pneumonia.  While on day 1 of my 8 day stay in the hospital, I started meds.  It still took me 18 months to become undetectable.  A lot of folks here gave me a hard time (out of concern) about not starting meds before I did, but I was scheduled to start the first of December, 2006.  Actually, I did start then, but I was seriously ill in the hospital.  My lung function / capacity will never return to what it was pre-PCP.

Back to your question... I lost quite a bit of weight (fat and a bit of muscle) even before the PCP.  I felt like crap, had no energy, but looked pretty damned good!  :D  However, it wasn't worth the OI's that I got to deal with due to waiting on meds.
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline tommy246

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  • Member
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Re: Feel like my legs are losing muscle....
« Reply #16 on: August 25, 2009, 11:19:46 AM »
i say your weight loss in the legs is defo down to losing all that weight ive just lost a stone in hospital  and its all come off my face a little belly alot and legs loads .
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

 


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