I am a fit 56 year old man who was diagnosed with SSc about 15 months ago but didn't really know what that meant having never been ill! Since then I have been on several cocktails of drugs including mycophenolate, hydroxychloroquine, prednisone, nifedipine, lorsartan and recently naproxen, gabapentin and montelukast.
Despite the help of some fantastic people the disease marches on at an alarming rate. My skin is so tight that both my breathing and personal hygiene are compromised. Worse are my fingers, hands and arms which are covered in sores and ulcers. At time of writing I am in the wonderful Royal Free hospital having a course of Iloprost infusions which we are hoping will help the ulcers.
I am due to start a clinical trial for a new drug next week but don't really know whether to go down that route or not?
Does anyone else recognise this story? How long before I get some remission? I'm desperate to get back running or at least to be able to play golf!