Does anyone have any feedback on Wegener's Gramgranulomatosis?

[Youelbeverly]

I have Wegener's and it has primarily affected my eyes and lungs. I've been on rituximab and 25mg methotrexate for two years but I have a host of issues from taking the rituximab.

[Runrig01]

You’d probably have more luck in the vasculitis uk forum. I’m only familiar with it through a GCA forum which I used to be on.

[Maisie1958 in reply to Runrig01]

Must have been writing this at the same time 😊x

[Youelbeverly in reply to Runrig01]

Thank you!

[Maisie1958]

Good morning Youelbeverly . I’m sorry I can’t help you but have you checked on the VasculitisUK forum on HealthUnlocked? You might get more information posting there? Hope you get some information, all good wishes.

[Youelbeverly in reply to Maisie1958]

Thank you , much appreciated

[Flipper12345yellow]

I've been on rituximab for 3 years.I have chest infections often, utis often and bowel and bladder issues but my pain and mobility is much improved.

[Youelbeverly]

The exact same here except the bowel issues. I've had some fluid overload with the last infusions so the infusions have been tabled at least temporarily. They did put my disease into remission or at least get it under control after the a year of treatment and I have been on them almost 3 years also. I'm not sure where I am headed now. Oreince has been mentioned. Thank you!