Does anyone else have a diagnosis of EGPA vasculitis?

Posted by gram27 @gram27, Jan 21 2:24am

I am interested in being able to discus experiences and share information with others who have been diagnosed with EGPA

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@leoniesnorton

Hi Joni, I live in Auckland and was diagnosed in 2016. I went through the same protocol. I am doing well. Managed to VERY SLOWLY get off prednisone and am now on low dose methotrexate. I have two numb legs from the knees down to the toes and a numb left hand. Not ideal but better than my Dad who died at 61 of the EGPA as they had no options to treat other than prednisone which didnt work well for him. We are lucky we have the 'Gold Standard' - Cyclophosphamide with high dose prednisone. Please contact me if you need any support Cheers, Leonie

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@leoniesnorton Welcome to Mayo Clinic Connect! We’re glad that you found this site. And you’ve given such a positive report on your autoimmune disease! I certainly hope that you’ll stick around and continue to help others!

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