Anyone declined rituximab with MPA and pulmonary hemorrhage

[Becca81]

Hi all,

I got diagnosed with MPA via lung biopsy after having two pulmonary hemorrhages within a few months of each other (lsst time in March this year). I had two preliminary doses of rituximab and high dose prednisolone and now 6 months on i am feeling better and lungs look clear. I am interested to know of anyone that has declined any further rituximab treatments just because i am thinking seriously about this as i wirry about risk of infection from being on rituximab and the fact that we dont know ling term effects. Obviously dont want to put myself in danger either. Anyone have any opinions on this? I have no kidney involvement only pulmonary and i am feeling well in myself now. Thanks

[Trhill05]

I am in the US, and was diagnosed with kidney failure 2.5 years ago and have MPA that effected my kidneys first then my lungs. After a very serious hospitalization 1.5 years ago and doing 2 rounds of Rituximab, I have been clear of any activity since that hospitalization. I am ANCA Negative and just got off Prednisone 3 days ago. Your dr needs to be monitoring your inflammation levels regularly to see if there is any activity. I hope you remain clear and hope this helps. If my Rheumatologist tells me I need to do another round of Rituximab, I will do it. The long term effect of more MPA related activity is not worth it to me. I still work full time and in good shape for 54 years old. Best of luck to you.