AS and Muscle Wasting

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Opossumgirl
Regular Member


Date Joined Oct 2006
Total Posts : 121
   Posted 11/9/2006 3:40 PM (GMT -6)   
Has anyone with AS got muscle atrophy (wasting) that is attributed to the AS?  I have started to lose mass in my calves, thighs, and shoulders.  I am also developing some weakness, though it it not real bad.  I lost 27 pounds over the last 9 months due to CD.  I am probably only about 5 pounds "overweight" now but the muscle disappeared ffrom limbs while fat stayed on my hips. I was diagnosed with the AS in 1995 but only started having the atrophy over the last year.  I was just diagnosed with Crohn's during that same period, but the GI says my small bowel ulcers are too far apart to be causing a malabsorption problem.  He said that I need to talk to the rheumy about it because there are several metabolic muscle scenarios associated with AS.  I can't seem to find very much info on this relationship.  I did mention it to my rheumy the last time, and I was normal on the CPK blood work so it was chalked up to the CD until we learned what the GI thought.
 
For meds, I was on Enbrel for 2 years without any muscle issues and then I stopped it for a year.  I went back on it at the same time as the beginning of the CD symptoms and was switched to Humira.  So far, I have only had 2 Humira injections.  Could the biologics cause something like this?  I don't get back to the rheumy for 5 more months unless the wasting increases or I start losing weight that can't be attributed to the CD; I need a break after the dozens of doctor visits and multiple procedures over the last year.
 
Thank you in advance for any comments!! 
Opossumgirl
DX W/AS 1995
Tentative DX of CD 8/2006
Taking:  Pentasa (1 Gram 4 x Day)
            Humira (1 Shot Every Other Week)
            Ultram as needed for Pain
            Advair for Asthma
            Synthroid for Hypothyroidism
            Metoclopramide as Needed for GP Nausea
            Metamucil (4 caps daily), Multi-Vitamin, Calcium & Vit D Tabs, Milk Thistle


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6796
   Posted 11/9/2006 6:31 PM (GMT -6)   
Wow! You are the first person I have seen mention the problem that has plagued me! I began having noticeable muscle atrophy in my right thigh quad about the time I was diagnosed with CD. At that point I had not lost any weight and was 60 pounds overweight. I kept showing this VERY large depression in the muscle to every doctor I saw. None could give me an answer. It looked like a large portion of my thigh had been carved out.

I have had symptoms of AS for many years but it was not diagnosed until right after my CD diagnosis. Now, 3 years later, I have lost 60 pounds, WITHOUT trying. My gut is in remission - no diarrhea or anything that would point to the weight loss. I have lost a tremendous amount of muscle mass and strength during this time.

Now a question for you - have you had any issues with your teeth? In the last year I have lost all of the enamel off the inner surface of my upper teeth. My dentist says ALL of this points to a severe metabolic problem. I have had about every blood and urine test there is and they can't find a thing to explain this.

I would like to find the information about the metabolic muscle issues in AS also. Let's join forces!
Ides
PS - I am on Imuran and Remicade but my muscle atrophy began BEFORE I started those drugs.
CD, Ankylosing Spondylitis, peripheral neuropathy
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MsKittie
Veteran Member


Date Joined Jul 2006
Total Posts : 789
   Posted 11/9/2006 9:26 PM (GMT -6)   
I don't know much about what your taking about or feeling but I hope you both fines the answers your looking for soon.
 
Opossumgirl

Welcome to HW you will find pleanty for supportive people here so please post as often as you can.
 
Best wishes to the both of you.
 

 
 
 
(((HUGS)))
   MsKittie
 
~*~*~*~*~*~*~*~*~*~*~*~*~*~*  
I have an illness, My illness don't have me.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*  

 


Opossumgirl
Regular Member


Date Joined Oct 2006
Total Posts : 121
   Posted 11/10/2006 8:53 AM (GMT -6)   
Ides,

Yikes!! That must be kind of scary seeing an actual niche in your leg!! My wasting is even and is occuring bilaterally. Like I said, it's not real bad, but I hope to get in front of whatever is going on here if it is at all possible.

Regarding teeth, I gueesing you can visually see the loss of the enamel or is it only something you can feel? I don't believe I have any issues with my teeth right now. I was at the dentist a month ago and the hygenist didn't say anything, but I didn't see the doc that day.

Indeed, let's join forces! I have id'd some metabolic possibilities like polymyositis, which is scary, but I found that as one of a few things doctors look at if a CPK blood test comes back elevated. I guess that test indicates increased muscle proteins in the blood from the breakdown, but I am not totally clear on it. I have not, though, been able to find anything on-line indicating a relationship between AS and these conditions. When I get time, I'll try to do more checking. Let me know what you find out! Also, are the docs just baffled or are any of your meds hopefully trying to help this??

Let's keep in touch on this! Thanks, Ides, and best of luck with this all. Icky!
Opossumgirl
DX W/AS 1995
Tentative DX of CD 8/2006
Taking:  Pentasa (1 Gram 4 x Day)
            Humira (1 Shot Every Other Week)
            Ultram as needed for Pain
            Advair for Asthma
            Synthroid for Hypothyroidism
            Metoclopramide as Needed for GP Nausea
            Metamucil (4 caps daily), Multi-Vitamin, Calcium & Vit D Tabs, Milk Thistle

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