← Return to Looking for any food links regarding Vasculitis - Wegeners disease

Discussion
Comment receiving replies
@oakwoman

I have vasculitis and not sure if Wegeners has been positivly identified in me. But I am firm on the stand I take that no prednisone will I take. I had PMR and took prednisone for 13months and it did such damage and I put on so much weight I didn't recognize myself in the mirror. I've been off of it for 5yrs now and have gotten to a normal weight. My bones have suffered and I have high blood pressure but it is still better. Now if the medication I am on isnt helping that's it! I wont take prednisone anymore. I'm posting this so others know the dark side of this medication. I'm on Nucala at the moment 3 mo in and hope it will make a difference. I hope the best for all who see these posts. For me its helpful to know I am not alone in this journey.

Jump to this post


Replies to "I have vasculitis and not sure if Wegeners has been positivly identified in me. But I..."

My son has ANCA vasculitis. I am so sorry for what you have gone through. He only tells me part of the story. I am trying to understand when he decides to give up meds. He does try to live life to the fullest and I have to believe that is the best thing he can do. Enjoy what you can and do what you love for as long as you can.