Likes: 
I have lung involvement-- specifically, alveolar hemorrhage-- which has been refractory to a number of treatments through the years. I've been on rtx for 5 years, which is the first drug to have gotten the Wegs under control.
For the first 3 years we did 4 infusions in a month, 6-12 months apart. It was brutal for me, as I have an uncommon bad reaction to rtx (each infusion causes extreme weakness lasting about a week, and the adverse effects of each weekly infusion were cumulative. A month of treatment took me 6-9 weeks to recover). The once-a-year treatment only kept the Wegs in check for about 7 months. Between the long recovery time and the 5 months of poor disease control, I had only a few weeks a year that were halfway decent.
Last year we started following a new maintenance protocol whereby I get one infusion at half-dose every 4 months. (The protocol is actually every 6 months but that was too long for me between treatments.) The Wegs specialists are all using this protocol for people who have severe involvement and require something more powerful to stay in remission than mtx or imuran.
So far so good. The single infusion only knocks me down for a few days.
Reply With Quote
Originally Posted by Sangye
! I was on 2000MG of Cellcept and between 1MG-5MG of Prednisone for almost 3 years, the last 2 years 1mg of pred. Last month I spent 2 weeks in Europe and wallah the occasional joint pains I started having 4 months ago and in greater frequency was the sign when on August 8th, I had occult blood in the urine +1 and today had blood in my sputum.
Bookmarks