← Return to ANCA Vasculitis: Side effects of 60 mg of prednisone a day?

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Profile picture for michaella7201 @michaella7201

@purehope2022 I started retuximab about one year ago getting 2 infusions every 6 months. I was on methotrexate a year prior and it was terrible and I have 4 surgeries for tracheal and subglottal stenosis. I have another infusion this Friday and feel like I may be having a flare up (although much less severe). I am wondering when retuximab will be be effective and if remission will happen.

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@michaella7201 Sorry to hear about your experience so far. I had 3 Rituximab infusions, 6 months apart before I began to notice a difference. I never got lower than 5 mgs of Prednisone during that time. When we moved, my new Rheumatologist was a "wait and see" guy. And when I became uncomfortable with that approach, I went to Mayo Clinic in FL. They were not "Wait and See" people and put me on methotrexate. I didn't have any trouble with methotrexate. But after 2 years it wasn't working and I went into a major flare. And so we started again. I was up to 60 mg of Prednisone + Rituxan + Methotrexate. We tapered Prednisone over 8 months. Quit methotrexate altogether and I am 2 weeks away from my 3rd Rituxan. My experience was that I only got to a non-active disease state for 2 years. But we do live with the damage, don't we. Unlike cancer patients, we do not get remission for 5 or 10 years. (Not most of us). We learn when we need to get to our Rheumy quick and start the drug protocols all over again.
My only GPA drug is Rituximab now. Glad to be off Prednisone. And hoping for another 2 year window. I do get monthly IVIG infusions! Rituxan destroyed my B-cells to the point of no return. So I get IVIG to stop from catching every thing that sneezes my way. Learning to be grateful for the small things!