Quote Originally Posted by Glenda View Post
Hello there, I have just joined this forum to see what I can find out about WG. Like you I was diagnosed in February of this year, and like you am still having a lot of trouble. My kidney function ranges between 20 to 40%, I have pain in my joints, have trouble with my sinuses, have headaches constantly (sometimes a dull ache but generally quite bad), constantly tired, feel nauseated and feel terrible most of the time. I see my Drs (nephrologist and GP) both monthly or more ofter if they call me in (due to decreasing blood results). I have weekly blood tests. Am on 25mg prednisone, have had 3 months of cyclophosphamide IV, and am on so many BP medications and still have high blood pressure. I always feel I am complaining when the Drs ask how am I. I have had to resign from work as I am so tired, weak and lack any energy. My condition is still not under control.
I am so sorry you have had to go through all this, but for me it is nice to think all my symptoms are common to people with WG, and I am not alone.
Hope you start to feel better soon.
Hi Glenda,
From reading the vasculitis foundation success stories, I have found that many of them that do not go into remission after a few months of ctx go on with rituximab and find relief fairly quickly.
Have you asked your dr about options?