Clinical trial update

[blu4runner]

After completing the 4 initial infusions of rituximab time was here for the randomization in the study. Half the participants will be given rituximab infusions on a quarterly basis and half will take Imuran daily. The purpose is to see which group stays in remission better.
I was randomized into the group getting the continued infusion of Rituximab. I had appointment with Dr Merkel last Monday and had the infusion. Overall my GPA is not active at the present time so that is good news.
I am still dealing with a lung issue with my right lung since I have scar tissue between my ribs and lung that has left me with about 50% capacity in that lung and causes quite a bit of shortness of breath.
I did meet with an ENT about trying to get my trach tube reversed but was told not at the present due to the severity of the subglottic stenosis. I will be seeking a second opinion in the future because I really want to be able to get the trach reversed.
Overall I am hanging in there just wish I could get the lung issue and trach resolved.

[JeanMarie]

Hoping the new year will bring you a resolution of both problems. We'll all be interested in the results of the trial--thanks for the update.

[Debbie C]

Sounds like you are having a very bad time with your lungs..Did the infusions help at all? Good luck in the study,I hope the continued rtx will help you more.:hug2:

[blu4runner]

Unfortunately my right lung is the lung with the issue and it's not really related to the GPA. It is scar tissue between my ribs and lung. I had a "lung decortication" last year to remove the fluid etc in the area but it has come back and I was told that a 2nd procedure is not recommended since the 1st didn't really work. Basically I have 50% capacity in that lung and it causes the shortness of breath for me. The issue is there isn't room for the lung to expand fully. Not giving up always seeking a way to fix the problem.