I am new to this site. I was diagnosed with Sarcoid 12/07 after a surgical biopsy of my lymph nodes. My doctor (Rheumatologist) started me on 60 mg of prednisone per day 1/08, which has gradually tapered down to my present dose of 5 mg/day. Once I reached 7.5 mg/day a few weeks ago, I once again started having symptoms - chest pain, ankle/feet/hand aches and pains, and severe fatigue. My sed rate at the time of diagnosis was 95, and at the time my doctor had me down to 7.5 mg it had dropped to 30. A second CT scan revealed my lymph nodes were somewhat smaller as well. I had another sed rate test last week (at the commencement of 5 mg/day), and it is back up to 51. My doctor is unconcerned, and says to proceed with treatment as planned. I am not a doctor (obviously), but I know my body very well....I am feeling uncomfortable that nothing is being done, and that as we decrease the pred my sed rate is going back up. Any thoughts, advice, comments, or shared experiences would be much appreciated!
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