How did you cope with the side effects tapering off prednisone?

Posted by abbeyc @abbeyc, Mar 19, 2022

Has anyone experienced issues when they first started to taper? this is day 2 for me (went from 16 mg to 14 mg) and I am experiencing headaches. Wondering if this is normal and if it will improve.

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This is not so much a comment or reply rather an update on a previous reply.

How did I cope coming off of Prednisone? I reacted as I mostly do to something I don't want to do. I gripped and moaned a lot, shed a few tears of frustration. Gave up on my Dr’s recommendation of going down one tablet at a time and went to half a MG down for 2 weeks and then down again until I got to zero. That seemed to work better. Then I moaned and complained some more until it was over. That was four weeks ago, now: Seriously, I tried to keep a positive outlook and tried to remember how bad it was a year before. I gave myself treats, downloaded a few good books on Kindle, read online news and articles, played my favorite computer games, started a crochet project, added collagen supplements to my list of vitamins, and talked to my sister on the phone a lot. Now I am in rehab to rebuild muscles in my legs and try and get back my stability. If you don’t have access to rehab there are a lot of good exercises online to draw on. There’s no one solution fits all, just look after yourself and put yourself first. Not something a lot of us are used to doing.

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@marg47

A great big thank you for your contribution on this platform. I hope and I pray that you will never have to be on this drug again it works but done of the side effects are costly. I've only been on prednisolone since August 2023 but my mood swings have been hard for both myself and my husband. I am weaning now and just about to go on 2 mg for two weeks then 1 mg the same then 1 mg alternate days for two weeks and finish. I can't wait. Hopefully I will be back to being myself.

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How much prednisone did you take at the outset?

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2 mg seems like a big jump to me. Maybe stick to the 10% of less equation?

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@marid57

How much prednisone did you take at the outset?

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50 mg daily

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In reply to @marg47 "50 mg daily" + (show)
@marg47

50 mg daily

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Were you diagnosed with polymyalgia rheumatica or something else? That's a high start dose for PMR and a very quick reduction schedule.

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@megz

Were you diagnosed with polymyalgia rheumatica or something else? That's a high start dose for PMR and a very quick reduction schedule.

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PMR

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Apparently there are 2 types of Prednisone patients in PMR, those who are Prednisone Sensitive and achieve faily quick remission and are able to taper to zero within a short time frame and those who are Prednisone Resistant and have a lot more difficulty and constant flares. Im one of the latter. It has been a major struggle, the only way i could get from 25mg to 7.5mg was at a rate of 1.25mg every couple of weeks. I also had to spilt the dose and take a small amout every afternoon as well as early morning. Now 7 months later i am stuck on 6.5mg in the morning and dealing with pain and stiffness every morning until the morning dose kicks in about 3 hrs after taking it. Have started Methotrexate 5mg weekly but not overly optimistic!!

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I have had to reduce by 1/2 mg monthly to avoid discontinuation syndrome and rebound pain.

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What is discontinuation syndrome? Prednisone withdrawal?
When I tapered to 7.5mg in October from 10mg in September I had diarrhea for10-12 days. December 5 mg and January 4mg no problem minimal pain and stiffness but February 3 mg and again diarrhea after 5 days for 10 days. Rheumatologist says not related to decreasing or prednisone. Anyone else have this problem with decreasing/tapering? Thanks

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I have GI issues but they preceded PMR by decades and don't seem related to my pred dose.

I definitely took the slow route - have taken almost 4 years to taper off 20 mg! I was able to taper faster at first but hit a little wall at 3 mg so had to do it slower (and go back up a little, plateau off for a while at 3 mg), and then re-start.

However, I have not had *nearly* the pain levels during tapering that you have. Wondering whether PMR is all there is?

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