Hi my name is Lesley, I'm very pleased to have found your group.
After over 10 years of being told there is nothing wrong with me I was finally diagnosed at RPA in Sydney Australia 2 years ago.
Have tried Infliximab, Colchicine, Cyclosporine.and Thalidomide. I'm not tolerating the Thalidomide very well (3 - 4 capsules a week) and probably will go on to something else in the next couple of months. I've been on Prednisone as high as 60mgs and am back down to 10mg, although I think it might have to be increased soon. One of the specialists told me that intolerance of drugs was part of the disease (which I had suspected).
I seem to have some very unusual lesions, even for Behcets sufferers - granulomas that very slowly work their way to the surface - takes months to heal. My other main symptoms are generalised muscle weakness and pain. I seem to have been in a very long flare (almost since diagnosis). I mentioned this to the specialist and he just nodded and said I had 'spiralled') - I was starting to wonder if it was psychological.
Just out of interest sake I am a 55 year old female from an Anglosaxon background.
PS Photo was taken 15 years ago - pre prednisone