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

Posted by joroy @joroy, Sep 25, 2023

Is anyone else having side affects from taking 60 milligrams of prednisone a day? I’ve been on it for 2 months, seems to be effecting my memory and not acting myself.

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clooney1 | @clooney1 | Apr 20 1:33pm

81 & lost hearing in left ear. MD put me on 60 mg Pred for 5 days followed by less & less for a 2 week period to jump start my hearing. On 5th day: I’m on OVERDRIVE!!!! Hearing has not kicked in. Scary being on this drug.

ptz71 | @ptz71 | Apr 24 6:17am

Oh yes, my experience with long-term high dose prednisone has been a journey! Used first for warm Autoimmune Hemolytic anemia, now for giant cell arteritis. Was tapered too quickly earlier this year with return of symptoms.
Now on very gradual taper (60mg X 2 months!) Just dropped to 55mg yesterday...
I once heard prednisone referred to as "the Devil's tic-tacs" ! Good description isn't it. While it serves its purpose well, the side effects require a lot of patience from us and our families.
I wish you all good things in this crazy life! Thx for offering your story, it helps.

michaella7201 | @michaella7201 | Apr 29 7:14am

In reply to @joroy "I forgot to say I was diagnosed with Anca Vasculitis" + (show)

@joroy I was diagnosed with ANCA vasculitis about 3-4 years ago. I get subglottal and tracheal stenosis. I have had 4 surgeries and the prednisone dosing is nasty and I have a lot to say. I've been looking g for someone with this diagnosis.

michaella7201 | @michaella7201 | Apr 30 9:54am

In reply to @purehope2022 "It is a nasty drug. So sorry. WhenI was diagnosed with ANCA Vasculitis -Granulomatosis with Polyangiitis,..." + (show)

@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.

purehope2022 | @purehope2022 | Apr 30 11:34am

In reply to @michaella7201 "@purehope2022 I started retuximab about one year ago getting 2 infusions every 6 months. I was..." + (show)

@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!