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Has anyone with PMR been able to get off prednisolone?
I am wondering if anyone has been able to taper to 0mg of prednisolone. I was diagnosed with PMR in June 2025 after 5 months of enduring very severe symptoms put down to post viral body aches. After changing my GP, I was immediately referred to a rheumatologist.
I began on 15mg, then 12.5mg, 10mg and have been tapering by 1 mg each month.
I am currently on 2mg. Feeling pretty good, a few minor aches but have been working with a physiotherapist and now able to do a gentle gym program, swim and walk regularly. I work full time.
My rheumatologist has advised to taper to 1 mg in a month and then stay on that for the rest of my life (I’m 63) to avoid a relapse. He said about 50% of patients relapse on 0mg.
My preference would be to try to get off prednisolone completely (and hopefully be one of the 50% who don’t relapse).
So would be very interested to know about the experience of others.
Thanks.
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I got off it after 12 months tapering like you have been doing. I have not had a relapse after 2 years off it. The aches persisted for 6-12 months in varying degrees but exercise improved them. They were nothing like PMR. It’s a very dangerous drug so I would not go back on it unless I had to. It gave me osteoporosis and my immune system took some time to recover. Perhaps get a second opinion?
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3 Reactions@jabrown0407 This comment is right on the money, in my opinion. I stayed as close to 10% a month as I could, although it's not totally possible. I did not have any flares and felt good for a couple of months at 0 prednisone, but aches started back. Not like the debilitating PMR kind, but the rheumy wanted to put me back on the prednisone. I decided not to go back on because of the sleep disruption and skin problems. I do suffer from osteoarthritis, but not the shoulder and hip inflammation that I had before. Meloxicam is working for this, which it didn't for the PMR. I feel pretty good and I hope PMR is behind me for a good long while. Good luck!
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2 Reactions@retiredphil I started at 15 mg then in two weeks 10mg then 1 month down to 7.5mg….At that point I started to worry about a relapse after joining this Forum. I decided to continue tapering but at a lower rate with some “ thought” involved as far as the % I was tapering.
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3 ReactionsI am wondering if anyone who has had PMR for a long time and has been on and off prednisone (P) as I have, has gotten off prednisone. I have been on and off prednisone for 35 years. About 18 months ago I went on Kevzara as was on 15 mg of P. I tapered down to 2.5 with no problems. When I went to 2 mg P I started to have paint and my rheumatologist had me hold at 2.5 mg P.
Again, my question is has anyone on the blog been on P for a long time (years) and been able to get to zero for a long time?
@cazwell50
Thanks. Good to hear your experience. I have been to see a professor of rheumatology and she is confident I can get to 0mg. She said to expect similar aches to what you describe but I’ll know it’s not a PMR flare up if it’s not that hour of extreme pain to get moving in the morning. She also advocated exercise, especially weight training. All the best for your continued recovery.
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3 Reactions@54pontiac
Thanks. And hope you are free of PMR. Such a strange and debilitating condition: comes out of nowhere and changes your life. I think we are all ok living with some pain if we can be free of those extreme symptoms. Good luck.
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4 Reactions@cazwell50 I started taking Prednisone in July 2024, 60 mg./day for PMR/GCA. I started a slow taper in September of that year. With the help of Actemra infusions, I tapered off of Prednisone in early November 2025. A month later I acquired numerous aches--knees, thumbs, wrists, occasionally hips and shoulders. When the aches began, my rheumatologist recommended that I take Prednisone. I did for a couple of weeks and it helped. But, I did not want to get into the vicious cycle of taking Prednisone and tapering off, so I quit taking it. I take extended release Tylenol twice daily. It helps with my wrist pains, but that's about it.
I'm happy to see that there may be an end to my aches. I do walk, golf, and water aerobics. The wa helps a lot.
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4 ReactionsI just lowered to 6 mg after starting at 20 mg in October. Only slight headaches in tapering. The secret sauce is Rinvoq that I take orally everyday. Doubt I could have made it to 6 mg so fast. BTW, my initial diagnosis was PMR then changed to GCA.
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1 Reaction@rosi75 Hi
I am off Prednisone for a month. I took it for a year. I had many side effects. Sometimes it was really difficult, but each week got better to handle . Not being able to get out of bed alone and even walk was a nightmare. I learned so much patience, listening to to my Dr, reading and a more positive atttitude. I don’t want to take that drug
Again. I walk avidly. I am 83 and doing so well. I am grateful and have Children and Grandchildren and Great Grandchildren. Getting ready to Celebrate 65 years of marriage to the boy I love so much. So many Blessing's. Life has its ups and downs we learn to live with change and heartache and grief. Keep keepin on and remember others care about you. Thanks for sharing. Warm hugs , Donna
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4 Reactions@jfannarbor If you have been on it for 35 years I would suggest you talk to your Rheumy, Endo (if you have one) and/or your PCP about testing your cortisol. Tapering successfully is mainly about waking your adrenal grands up since long term use of prednisone puts them to sleep. I would not be surprised if yours have the "Do Not Disturb" sign out. You might want to do some research on prednisone and cortisol to better understand what is going on inside your body. Things we cannot see or feel are at work within us.