Diagnosed December 5, 2017. 30 mg of prednisone

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Diagnosed December 2017 in my lungs. 30 mg of prednisone then tapered off to 15 Jan 7th. Within 2 weeks back with major SOB. Put me of QVAR inhaler.  Within 10 days I had muscle weakness really badly in legs but also in stomach area, arms and hands. Monthly x-rays show granular nodules going away but lungs still look bad. Still on 5 mg of prednisone. Muscle weakness is bad. Anyone else have muscle weakness with sarcoidosis

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  • Posted

    I have not.. are you having pains in your hands? I'm taking 25 of prednisone.. plaquenal and methaltrexate..

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    • Posted

      I just push myself.  My Pulmonologist suggested that was good.  Build up my lungs and leg muscles.  I try to walk 1 1/2 miles a day.  I walk around my neighborhood so that if I can't make it I just stop at my house.  I used to walk 3 miles to our small quaint waterside downtown and back.  Not ready to risk that yet.  Shortness of breath "sucks" and so does muscle weakness but reading all these posts really makes me appreciate what I have and what I "could" have. If I only had the answer to my muscle weakness.  Appointment in November with a neurologist at Duke University - maybe they will find the answer.  

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  • Posted

    Yes. I do have muscle weakness in my legs sometimes. It isn't constant, but comes and goes unpredictably. Some days I can cheerfully dance, others it's a struggle to walk uphill to the local shops. Seems to be another Sarcoid symptom rather than medication related.

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  • Posted

    Could it be the predisolone? I had major aches and pains in my legs knees hips and fingers the whole time i was taking pred and for a few months after xx
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    • Posted

      I was thinking that from other conversations.  I wanted off of it - knocked me down to 10 mg August 1st but shortness of breath came back with vengeance.  Put me up to 40 mg for 3 weeks.  Aggressive treatment - X-rays and see if that helps to be more aggressive.  Possibly change meds - take me off prednisone. 
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  • Posted

    I have some muscle atrophy in forarms and lower legs. Normal EMG. Muscle  pain in legs which Dr feels is from SI joints ~ sacroiliitis. Having SI joints injected this Wednesday.  Hoping that helps. Going up  steps is difficult. I also have Small Fiber Neoropathy which Dr feels contributes to pain. 
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  • Posted

    Hi Rae, 

    i am still on hospital. And Havel 

     been diagnosed a few days ago. But one of my worst symptoms following fatuous is muscles weakness. 

    I start treatment with predisone and methatrixilate (spelling I have no clue) tomorrow!

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    • Posted

      My doctor is considering another med too - Just hate taking medicines.  Don't like side effects.  The one he is wanting to put me on is a cancer drug - kills "good" cells.  Went to see my heart doctor this weak and got his opinion on it.  He said go for it!  It is only temporary and could help. He had several patients taking that med.  So we will see in a couple of weeks.  Until then - I am thankful my Sarcoid isn't worse than it is.  "Sucks" - pardon the pun - but with God all things are possible.  

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