-
Thank you very much for your response. I’m so sorry to hear that your story is similar to ours. It’s incredibly hard, and everyone goes through an unimaginable journey within this illness.
My wife is currently on 15 mg of prednisone. In the past, when she went up to 40 mg, it did not lead to any improvement. The collapse we’ve been experiencing over the past month happened when we started trying to taper the steroids by 1 mg every two weeks. We reached 13 mg, and there was an immediate deterioration of the disease — complete helplessness, worsening of all symptoms — and we haven’t been able to get out of it.
On the other hand, the doctor decided to double the IVIG dose to 40 grams every two weeks, and we started this week. So far, there hasn’t been any real change.
We tried CellCept for 11 months and stopped it a week ago. Now we’re waiting to understand what the next line of treatment will be. We don’t know whether Vyvgart will be approved for us as seronegative patients, or whether we will be required to go through rituximab first.
We’ve heard some negative reviews about rituximab. Does anyone here have information regarding the effectiveness or quality of this treatment?