My name is Ashton, I am 21 and I have Systemic Sclerosis. At first, my Raynaud's affected me the most. I had at least 6-8 ulcers on my fingers at one time, all of the time! I was having Iloprot every 8 weeks, and struggling with daily life. Then, my lungs started to deteriorate. So last year they started me on Mycophenolate. Immediately, my lungs got even worse and so I had a course of Cyclophosphamide treatment which helped my lungs get back to how they were. More recently, I have been put back on Mycophenolate and the same thing has happened again... I am waiting for an urgent review at The Royal Brompton in London to find out what treatment they will use this time.
I am aware that there are only 3 options now... Mycophenolate, Cyclophosphamide and one other. Is this correct? And has anyone else found that Mycophenolate just made them worse? EG> Breathlessness, chest pains, bowel problems, rashes?
Thanks for reading!