Hello Everyone:

Both my son and myself have had Wegener’s/PAN small to medium vessel disease for over 20 years. We have both relapsed numerous times although successfully treated with whatever the drug of choice was at the time. From Cyclophosphamide & Prednisone, through CellCept/Imuran, more Prednisone, and in more recent years - Rituxan/Rituximab (which worked best & with no side effects).

My last Rituxan treatments were four weeks of infusions at end of 2017 and with the fourth week in January of 2018. At that time I had experienced Vasculitis of the brain and severe skin ulcers. Now I appear to have relapsed again with the onset of a peripheral and now more generalized polyneuropathy at end of October.

This is has put me in bed for going on five weeks with worsening neuropathy symptoms including increasing (systolic) blood pressure, & some signs of brain and cranial nerve involvement. I am now living in Nashville TN, having moved here from the Los Angeles area 5 years ago. Recognition of Vasculitis relapse by our Nashville doctors has been disappointing at best although we have tried.

Due to this our family has been forced to make multiple returns to Los Angeles for both my son and myself. Our doctors there have written multiple long distance prescriptions for both of us to receive Rituxan infusions in Nashville. Although far from ideal this situation illustrates how difficult Wegener’s can be to manage.

As a longtime patient and mother of a patient please let me know if I may be of help.

Recently one of my physicians shared that current protocol was to give Rituxan every four months to prevent relapse. Had anyone else been told this?