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.

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  • 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 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

  • This is a great reply, Lorraine.  It's great to know you're here.  Makes me feel even more glad I found healthunlocked.  Am sure Lynn will be feeling likewise...Lynn: am wishing you all the best with your version of this

    🍀🍀 Coco

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