Hi there, I have been a lurker for a while and decided to come out of my cupboard. I am just coming down from the roller coaster of diagnosis of limited cutaneous systemis scleroderma. It was found following an emergency hospital admission for pericardial effusion, four months of tests showing up further heart/immunity issues eventually ruled out pulmonary hypertension. The possibility of PH left me feeling rather bleak, however now that has gone I am ready to face the scleroderma diagnosis. I've been told my condition is early diagnosis and mild which gives me hope. I saw Prof. Denton who suggested discussing either hydroxychloroquine or mycophenolate when I see my local rheumatologist in a couple of weeks time.
My bothering symptoms are raynauds, sausage fingers, occasional swallowing difficulties, digestive issues and breathing difficulties on continued exertion, hopefully this last one will improve as the fluid around my heart reduces. At present no problems that a lot of "well" middle aged folk cope with.
I no longer randomly ask Dr Google for advice as that just sets off anxiety, my sources for info are my consultants, nurses and SRUK. I would love to hear your experiences of either of the two drugs I may be offered.
Thanks in advance.