Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hello all, Well I saw the rheumy yesterday, but she completely refused to treat me. for those of you who don't know, I have Dercum's Disease, a rare disease. Recently a member of my DD support group started Remicade/MTX because she also has RA and AS. But she and her doctor found that the Remicade was also shrinking the Dercum's tumors. My GP referred me to the rheumy for possible treatment, and she refused because the treatment would be " off label. " She said as soon as there is some research (not likely) or approval by the manufacturer (also not likely) she would think about it. Needless to say, I was not happy. Well, actually, I had a major meltdown when we got to the car. Imagine knowing there is a drug that will relieve or remove your symptoms, and being told you can't have it! I won't quit fighting, or searching, but today I'm just gonna lie low and lick my wounds. Thanks for listening, Judi Quote Link to comment Share on other sites More sharing options...
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