Has anyone had any experience with these drugs.? I have written several times before, and now have a new Rheumatologist in San Francisco who is wonderful She is from Ireland and has actually treated several people before with GCA . I have been on Prednisone for almost a year now, beginning at 80 mg. I have had 2 or 3 flare ups after reducing too quickly or too much at one time. In recent months I have been going very slowly. At 13 mg I had a flare up and went back up to 20 for a while. I have been on that for over a week and doing well, however my monthly blood tests are showing my CRP rating increasing each time I reduce, and also my blood platelets. The CRP is now 1.8 after rising to 1.6 the prior month. It was totally under control at high pred doses. My new rheumy just wrote me and said that there is a drug named,above, which she has used on 2 other patients with GCA here with great success. I have written her asking what exactly it does. It is given intravenously. It would be in addition to the pred I believe. She is concerned that each time we reduce the pred be it very slowly the measurements rise. Just wondering if anyone on this site have tried this drug. It is apparently not approved by the Federal Drug administration for this purpose, but that probably doesn't mean much considering how they administer.!
Thank you for all of your help.