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gina30088
gina30088

Hello

I was on a forum for pmr for11/2 years  finally off prednisones for one week started getting night sweats fever difficulty breathing. Hospitalized had bronchoscopy and diagnosed with sarcoidosis. Night sweats went away after starting again on prednisone 25 mg  and medicine for continued cough. Decreased to 20 mg night sweats started again. My rheumatologist feels it was possible never had PMR as my inflammatory markers were not raised until this episode of sarcoidosis this last month . My pulmonologist is much more or appears more serious about this disease and seem to say it would be a long time and struggle before remission as in months to years  my rheumi said could get better  in a few months so needless to say I am confused. My markers are down my fatigue is better still coughing and have some shortness of breath. White What have others experienced in regards to course of illness I also have ankle pain but that’s  The swelling in my ankles is gone there were many enlarged nodes in the long thank you for any comments or encouragement. 

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  • barbara1449
    barbara1449 gina30088

    Posted

    Hi Gina30088, so sorry you’ve been diagnosed with Sarcoidosis. Sarcoidosis can affect any part of the body, all of it, part of it, or just one part. Every Sarcoid patient is different so it’s difficult to generalize. I suspect your pulmonologist is showing more concern because the lungs can become quite permanently damaged. Prednisone is usually the medication of choice and as you already know it does have side effects. Hopefully you will begin to feel better in a few months depending on how long you’ve had the cough and pulmonary symptoms and how much damage has been done. It’s not a quick fix. Some people just have the initial attack, get treated, or not, and it goes away and never returns. Some have recurring flares for years or for life. You just never know. You’re actually lucky you got such a quick diagnosis. Some go on with wrong diagnosis’s for years - 35 years in my case. It so mimicked MS it wasn’t until I was diagnosed with pneumonia 5 times in one year and I was so out of breath I couldn’t speak an entire sentence that they did an open lung biopsy. That was 20 years ago. I’ve never had a flare with my lungs but they are badly damaged. I was treated with high doses of prednisone for a total of 18 months. About 8 months of that was just coming off the prednisone.  I do have it in my bones and joints and that has been ongoing. I’m currently on Remicade infusions and Methotrexate Injections and doing very well. Try to eat as healthy as possible and get enough rest. Do what your doctor says and good luck. 
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