Sarcoidosis and muscle weakness(waste)

Posted , 3 users are following.

I was diagnosed with Sarc December 2016 put on 30 mg of Predinsome.  Worked wonderfully!  Breathing much better!  Xray one month later and lungs had begin slightly clearing so decreased me to 15 mg.  2 weeks later began worse SOB so instead of going back to 30 mg of Predinsome he put be on QVAR inhaler. Withnin 1 week I began numbness/weakness of legs(mainly) but also of arms and hands.  He didn't believe it was the QVAR but took me off anyways.  Muscle weakness continued but my monthly chest xrays so a slow but an improvement so my pulmonologist believes that the prednisome is working.  Sent me to a neurologist.  EMG, MRI, MRA, and Lumbar puncture done and nothing shows why I have muscle weakness/waste?  Has anyone esle had muscle weakness/waste?  Could this be a side effect of prednisome?  My legs are the worse.  I feel like they will give out of me any minute but they don't. I push myself and walk 1 1/2 every morning and try to walk another 1 1/2 in evening.  

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3 Replies

  • Posted

    Hi Rae. I also experience muscle weakness in my legs. It isn't constant. Some days I can walk for arond 8Km, other times it's a struggle to walk to the shops, about 10 minutes away. I haven't been on Pred for a couple of years now, so maybe it's another feature of our weird ailment!

    • Posted

      Thanks for your response.  I guess until they know more about this we just struggle on!
  • Posted

    Rae I was diagnosed in December 2016. So far I have not been on prednisone or any medication as far as that goes. With mine I seem to have "flare" ups. Feel great for a few weeks then feel really bad over night and it last for a few weeks. The one thing that I've noticed is that last times I've felt bad I've had muscle weakness and really bad fatigue. I don't know if this is coincidence or if it is coming from the sarcoidosis.

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