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Experience with Methotrexate?

Polymyalgia Rheumatica (PMR) | Last Active: Jan 31, 2023 | Replies (91)

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@douglow

I was diagnosed with PMR in Jan 2022; started on 20 mg, and went on a taper of 2.5 mg a month until 10 mg, then 1 mg a month. I had a flare around 10 mg, moved back up to 11 for a few weeks and things quieted down, then got to 5-6 mg before another flare which presented mostly in my hands (which had not been previously affected). I had trouble bending my fingers and making a fist, along with a return of mild bi-lateral shoulder pain (though so hard to separate it from partial rotator cuff tears predating the PMR diagnosis. I was moved back up to 10 mg and started a new taper schedule going down by 1mg every two weeks but at 9 mg the hand issues returned. Now my rheumatologist is suggesting that I consider going on Methotrexate and I am concerned whether this is indicated at this point in the treatment.

Is anyone on Methotrexate? Once you are on it do you stay on it indefiniely or is it tapered off ideally as well?

Are the side effects of Methotrexate worse than long -term Prednisone?

Is it premature to consider getting more aggressive; put another way, is there any clear protocol on when moving to this drug is indicated?

I read that many on this forum have been tapering for well over a year and I am only 9 months in so wondering whether I just need to be patient?

Thanks to all who can shed light on this.

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Replies to "I was diagnosed with PMR in Jan 2022; started on 20 mg, and went on a..."

I have been dealing with PMR for 2 1/2 years. Tapered off Prednisone and got a flare up. Started back on 5, now down to 3 and not feeling great. My hands also are really hurting. Just got a second opinion from another Rheumatologist and I am going to stick with her. She clearly wants me off the Prednisone since it effects my blood sugars and bones. I will probably taper slowly off the 3 mg pred which doesn't seem to be helping, while on Methotrexate. Both Rheumatologists believe it is the lesser of the two evils, depending on those side effects. Just means more blood tests to monitor liver. Not easy and this pain from PMR is not something you can even describe. I take calcium pills, had Reclast infusion and stay active to protect my bones. Challenging times.

@douglow if you need to get off Methotrexate, you do have to taper off the Methotrexate tablets every week till you have no more doses to take. I went from 8x2.5mg to 6x2.5 to 4x2.5mg. etc. till I went down to zero.