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Old 01-23-2011, 11:52 AM   #1
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Join Date: Jan 2011
Location: Somerville, MA USA
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Sharoney HB User
Lupus Myosistis, ck questions

Hello, I'm so happy to have found this forum!

I've been in the yes-it's-lupus, no-it's-not category for almost 25 years. Several years ago a biopsy dx'd chilblains lupus, which I gather is a form of discoid.

A few years ago a muscle biopsy showed type I and type II muscle fiber atrophy. My rheum said she didn't know what it was, consulted with a neuro who felt it was neurologically based. Recently the hospital where she practices put all our test results online (pw protected, of course) and I was surprised to see how long the ck had been elevated. Plus, I had always thought my ANA was marginal, only to find it was 1280 at one point and then 2560 the next time.

Getting sick of people telling me the atrophy is because I don't exercise enough - grrrr - I pressed the rheum who said lupus myositis was probably an appropriate name. She has always thought I have Mixed Connective Tissue Disease w/features of lupus and sjogren's.

So, my question is, after years of only mildly elevated cpk (generally mid-high 300's, occasionally low 200's) I'm beginning to wonder if I should take this more seriously. I've been thinking that since it's not a high level it's not that big a deal. But, now it occurs to me to question whether years of mild elevation may still lead to progressive muscle wasting, although at a much slower rate.

So, I guess my questions are:
  1. Does chronic CPK elevation, even if mild, lead to significant muscle wasting in time?
  2. I know once the muscle dies it doesn't come back, so does exercise really help? And, what is the mechanism? Do you develop new muscle fibers to replace the dead ones, or just strengthen the surrounding ones to compensate?
  3. Do you have to excerise the specific muscles that are problematic or just generally exercise? The only weakness I notice at this point is hands, feet and sometimes arms.

Well, these are the first questions I've ever asked. I always get a little tongue-tied when I'm at the doc's. I really like her - and trust her - but it seems like she's always so upbeat I would feel foolish to make a big deal out of what she presents as fairly routine. I know a lot of docs see so much really serious disease it's often hard for them to get excited about us "mild" sufferers, even though "mild" can ruin our lives. Sigh. Thanks in advance for any info!

Sharon

 
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