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Any Tips For Tapering Off Prednisone?

Polymyalgia Rheumatica (PMR) | Last Active: Sep 5 9:44am | Replies (79)

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@andirae

Well, my visit to my rheumatologist last week did not go as expected. She has been on me about moving my dosage level up and going on methotrexate or kevzara. Both of which I am not ready to tackle yet. I have been tapering as I said and have worked down to 5mg. It's not been perfect but I have been able to maintain it. At my visit she did an about face and agreed that I continue to taper down. I was rather surprised. But I am concerned about how she suggested to taper. She thinks I should go down 1mg every two weeks! Is that possible to do successfully? That seems awful fast to me. I am no expert and I know many of you have been doing this process longer and have had more experience. Has anyone done this? Needless to say I have been hesitant to do any move at this point and has caused great anxiety. I do want to continue tapering successfully.
I know everyone is different.

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Replies to "Well, my visit to my rheumatologist last week did not go as expected. She has been..."

When I was on prednisone alone I could never get down to 5 mg let alone taper any lower than that.

I tapered that quickly when a biologic called Actemra (tocilizumab) was tried. I tapered my prednisone dose by 1 mg per week when I was doing Actemra injection so yes tapering that quickly is possible.

I had to stop tapering when I reached 3 mg of prednisone because of a low cortisol level.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
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When my cortisol level improved, an endocrinologist said I could go from 3 mg to zero without tapering. My endocrinologist said no tapering was necessary at that low of a dose as long as my cortisol level was adequate.

I suspect faster tapering while on low doses of prednisone depends on your adrenal function. This assumes PMR is in remission. Kevzara might help to get PMR into remission but it doesn't come with any guarantees.

Why are you resistant to Kevzara?

I attempted 1 mg monthly and kept flaring. I then reduced by 1/2 mg monthly and am now approx 2 months prednisone free. Not pain free, but managing, after over three years on prednisone.

I'm on Kevzara - which is my new favorite drug ever!!! Absolutely no side effects and it returned me to symptom free status! After a few months on Kevzara, I began tapering 1 mg per week. Not a problem.till I dropped from 4 to 3. Working with my geriatric rheumatologist, I increased to 4 then 5..I'm at 5 now and will touch base with him later this week. If I can stay at 5mg or below, I'd love it. However he wants me free of pain and stiffness and let that be my new dose and I'm not quite free of pain and stiffness.

Urge you to give Kevzara a try. I was afraid of both Pred and Kevzara but my Dr gave me confidence to try. Also - let's face it, it's a quality of life issue. As I said to a civilian recently, "How many seasons are you willing to watch go by as you sit at your kitchen table every morning, waiting to be able to move?"

At 5mg, I tried reducing by .5mg every two weeks, and the results weren't good (pain first reduction, increased pain second). After a few days at 4mg, I returned to 5mg and started back down tapering at the rate of .25mg every 10 days. This worked for me - minimal to no discomfort. Of course it also doubled the remaining time, which meant ending in July rather than April. I don't regret the extra 2-1/2 months.