Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Hi all,I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis.I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough..... Quote Link to comment Share on other sites More sharing options...
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