Hi I'm new here - I was diagnosed with cerebral vasculitis in Nov 2015. I have read a few posts but can only read for a short while everyone seems to know a lot more about their condition than I know about mine. I am now on 1500mg cell cept and 5mg prednisolone plus the various others for my stomach and bones. I have been experiencing back side pain, had an ultrasound on Friday for gall bladder will not get results for 7 to 10 days.
lynnj: Hi I'm new here - I was diagnosed with... - Vasculitis UK
lynnj
Hi Lynn. Welcome to the "One in a Million Club". I also have Cerebral vasculitis - I was diagnosed in September 2011 after a brain biopsy and 2 months in hospital. I started off with a hard hitting course of Chemotherapy and then went onto Mycophenolate (Cell cept). I'm currently on 3000mg a day. As you are, I also take the different tablets for stomach and bones etc. I'm trying to taper the steroids - I started on 60mg a day and now after four and a half years - I'm down to 2mg a day. Not an easy task as you may know. I also suffered a stroke behind my left eye causing me 30% vision loss. The vasculitis unfortunately seems to have contributed to other problems one way or another. I've just had a bi-lateral hip replacement - Doctors think this was needed because of the damage caused by the long term steroid use...! One of the biggest problems has been fatigue - I get so tired - sometimes doing nothing. Its very hard to lead a normal life when the tiredness hits you. Having your immune system suppressed is also a problem as you are susceptible to so many infections. I hope you are getting the support that you need - both from family and friends and from doctors. If you need advice - John and Susan Mills at vasculitis.uk are brilliant or if I can ever help or you just need a friend to chat with - please feel free to get in touch. I may not have the answers but I can remember how scared I was when I was first diagnosed and it was a great help to talk to people who understood.
Good Luck and Take Care
Lorraine x