My Nephrotic Syndrome was controlled with Prograf for three years until I started relapsing every time someone near me sneezed. The steroids were sort of working to keep me under control, but they took a long time to work and I hate being huge. I had a biopsy done this year. From that, I had a Rituximab infusion. That seemed to take care of things for about five months, until this most recent relapse that came back with an attitude.
I’ve seemed to develop some vocal tics that no one can connect to the relapse, but it also went away with the steroid being IV. Now that I am tapering from steroids, the tic is coming back. Not only am I super hungry and anxious about being made fun of for looking like a puffer fish, but now I have these crazy loud tics that no one can explain. The next steps are to wait and see, and test my urine as I slowly taper from steroids. My blood does crazy things and my doctor is super nervous about levels that are so confusing to me.
I am thankful to be among the best doctors in the world. I can’t believe how hard they work for me. I hope someday I can return the kindness. I know there will be a cure. Fear will only make you crazy.