New here. Diagnosed Feb 2017

Hi All,

thankyou for allowing me to join this wonderful community. it is so good to know that there are more of us out there.

I was diagnosed in 2017 after months of sinus involvement and joint pain. it took 5 specialists to get this disease nailed down in the end.

At its worst i had disease showing in the following areas. Joints, eyes, sinus, ears, lungs and of course the kidneys. i had rituximab and steroids at first, then they were maintaining me on Azathioprine.

I have been on long term Azathioprine, and have been in remission for 5 years. recently my lab results showed that my Bone marrow was struggling because of the Azathioprine.

so they decreased the Aza, but Wegener's has made a come back because of it. i have just had a Rituximab and are due to have the second dose next week.

Lets just hope that this kicks it back into remission!

Hi Ian,

Unfortunately it's always a balancing act with the meds. Ideally you want to be on the lowest dose that still keeps you in remission.

Azathioprine worked well as a maintenance drug for many years for me, but eventually I had to move on to Rituximab, which has also worked well.

I'm sure the Rituximab will get you back in to remission, so try not to worry.

I hope your kidneys recovered from any damage caused.