2+ months ago my daughter(19) had significant hearing loss and cough and then some indicator of disease activity in lungs on CT scan. Labs were fine, but they finally figured out this is a relapse 6-7 weeks ago(diagnosed 3 years ago with major kidney and some sinus and some lung and has been doing RTX as maintenance). 60mg prednisone, which started 4 weeks before 4 weekly RTX infusions, brought her hearing up quite a lot. After 2 RTX and after dropping from 55 and then 50 her hearing has dropped (verified by hearing test) and she thinks has dropped more since Monday when they did the test.

The doctor via nurse said RTX takes 4-6 weeks for full effect and to wait to taper more until a week after last RTX (so April 19th). We are wondering if she should go back to 60. How long can you be on 60? We are going to try to get the doctor to call us tomorrow to ask him this. Thus far we have not been impressed by his attentiveness or availableness nor by his ability to communicate that he cares. (I should probably leave this sentence out as it is just complaining)

We don't want to go to cytoxan unnecessarily but don't want to lose hearing either. I don't know how they are going to know RTX is working because her labs have been mostly fine through all of this.