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Sarcoidosis Lung & Bone Marrow Involvement Questions

by DebraSarcoid, Aug 29, 2007 01:11PM
I was diagnosed in 1999 with sarcoidosis in my lung (biopsy done). After almost 2 years of being on prednisone the sarcoid became inactive.  I lost all the weight I had gained and was doing good.  Early in 2005 I started having many deep bone type pains.  Several tests were ran and a PET scan showed multiple places throughout my bone marrow from head to toe.  A bone marrow biopsy was done and came back positive for sarcoid.  Brain MRIs over 4 years showed multiple spots which started as 2 and is now at 5 spots, 2cm, suspicious of MS.  I was referred to a Nuerologist who stated the spots were not sarcoid.  I have an excellent family doctor as well as an excellent sarcoid specialist.  My concerns and questions are that after 2 years of continued medications being added and doubled to my daily routine, I continue to feel worse and see no improvement.  I am finding it harder and harder to get through each day without crying from hurting or from feeling depressed from everything.

My medications - Methatrexate, Arava, Celebrex, Prednisone, Lyrica, Cymbalta, Ambien, Prevacid, Xanax, Percecet.  I only started Arava last week.

I feel as though I only keeping adding new medications, or increasing doses, to get through this.  I am now extremely overweight which is only making matters worse.  I don't feel like anything is helping and instead of improving I am only getting worse.  I have muscle twitches which I am not sure if this is due to medication or what.  

Guess I am just looking for some opinions or guidance, or even just feedback ... as to if there is anything I should be asking my doctors or looking into myself.  Thank you so much.  (ps, I just turned 40 so am hoping to get this under control)
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