New to this Community

I am new to this group but have been on other groups regarding vasculitis for a few years helping others with advice and support.....

I am 54 years, I had PAN when I was 21 years and went into complete remission after 5 years. In 2013 I was diagnosed with GPA. I relapsed again in 2016 and struggled to get it back under control. 7 months later I am now back under control, but I think it may have attacked my lungs again. I go for lung scan in June 2017 and bone density checks.

I'm currently on prednisolone, imuran, crestol, fosavance, Vit D and calicum. I've had rituximab x3 which helped to reduce my steriods.

Symptoms for both PAN and GPA were similar, but the only difference being that PAN affected my kidneys and GPA is affecting my lungs and respiratory system. Main symptoms were joint pains in fingers and feet gradually affecting my knees and made it painful to get out of bed and down the stairs. I also had painful and weeping nodules on my elbows, loss of appetite and weight loss.

5 Replies

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  • Welcome to the group. I too have gpa, diagnosed 17 years ago. The introduction of rituximab for my treatment has made a massive change to my health and enabled me to ditch both steroids and methotrexate while remaining in remission. I do hope it does the same for you.

  • I've had rituximab 3 times and managed to reduce my steroids however last year I went down to 6mgs and I relapsed it took me to December to recover it back albeit I went to 20mgs.......think that was the Dr been to optimistic to reduce my steroids.

  • I reduced really slowly once I got to 10mgs. I did it at 1 mg drop each month which worked for me - too fast and I would have flared again.

  • That's what I did last year 1mg per month from 10mgs but once at 6mgs I flared up again

  • Maybe try again even slower?

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