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Tapering off of Prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Feb 28 5:49am | Replies (313)

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@marmak

Hello, am new to the group. Have been reading this thread in particular as I am trying to wean off of prednisone and still maintain a decent quality of life. I was diagnosed by my GP in early 2017 and started on 5mg, Had bumped to 10mg due to a flare up, and have been slowly weaning off with intermittent bumps due to increased pain. I had been having symptoms for at least 4 months prior to diagnosis, thinking I had injured my back, neck, and shoulders at work (former nurse, could have happened). I took way too much ibuprophen trying to work and keep up with other obligations. I damaged my kidneys and can no longer take NSAIDS. It took 6 months to get an appointment with a rheumatologist ( rural area, 1 practice with 2 docs in a 150 mile radius). He has told me the last 3mg are the very hardest to wean off. My brother also had PMR, is off meds with no flares in several years. He told me i would have pain the rest of my life and needed to decide how much pain I could tolerate to get off prednisone. There are days I can hardly move, needing help to dress, get things off shelfs. My doc wants me to wean down to 1mg, which I've put off until after the holidays. Stress definitely affects me physically. He told me I could play around with the dose, take 1.5 one day, 1 the next. Has anybody come across a weaning strategy that seems effective?

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Replies to "Hello, am new to the group. Have been reading this thread in particular as I am..."

Hi marmak ... I'm a retired nurse. I took prednisone for more than 12 years so I could still function as a nurse. According to one rheumatologist, I have a full range of rheumatology problems including PMR.

I rarely could get below 10 mg of prednisone. You are doing much better than me. Your weaning strategy seems effective to me by comparison. I did a lot of experimenting with tapering off prednisone but I wasn't very successful.

One rheumatologist said if I was only taking 3 mg of prednisone he wouldn't care so much. My history of more than 12 years of moderately high doses of prednisone daily wasn't acceptable. When a biologic was tried, I tapered off prednisone in 7 months. Much of the seven months was to give my adrenals some time to recover.

I still take the biologic so I can't say I'm cured but I might be in remission. I have been off prednisone for 3 years except for a couple of mishaps when I needed some prednisone for a couple of months.

I live in Iowa which is a rural area too. Fortunately I worked at a university hospital that has a relatively large rheumatology department. When PMR was diagnosed, it took three rheumatologists to get a consensus of opinions.

I think the best strategy to taper off prednisone is to keep trying.