Has anyone with PMR been able to get off prednisolone?

Posted by gippy @gippy, Mar 6 3:46pm

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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My initial dose was 50/40/30/20/10/5. Which worked for a week, then PMR came back. So I started at 20 and tapered 1 mg per month until I got down to 10, then 1/2 mg per month.

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Profile picture for rhb80 @rhb80

Good advice from your doctor on tapering. The issue when you taper 1 mg at a time when you get down to the lower doses the percentage decrease starts to go up.
5mg- 4mg is a 20% reduction then 4-3mg is a 25% reduction. 3-2mg is a 33% reduction, etc.
Your adrenals don’t know it’s easy to drop 1 mg at a time but you’re inadvertently increasing the taper percentage wise. At the lower doses it may be important to split the 1mg tablets as needed and/ or pulse with 2mg then 3mg then back to 2 mg etc.
I’m down to 1/2 mg every other day and then will drop to 1/2 every three days etc.
Good luck

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@rhb80 … thanks for the focus on percent reductions for tapering. My new GP verified / diagnosed PMR at the end of January. Classic symptoms and then labs. I started immediately with 15 mg of prednisone and within a few hours felt so much better. A couple weeks ago I felt like a new man. Last week I dropped to 12.5 mg, a 17% reduction. After a couple of days, a little bit of dull ache returned to my shoulders and neck. It seemed like I was 83% of that new man. Linear relationship? Anyway, everyday seems to be incrementally (slight) better with the lower dose. I see my GP next week so I’m … excited … curious to discuss this with her. Peace to all and bless your path.

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Yes off pred for pmr & GCA
Had a 3 & half month rapid taper course pred , starting at 50mg , Concurrent with Actemera 162mg weekly subcutaneous for a yr .

4months med free in remission no symptoms , no long term side effects from treatment.
Feeling well and grateful.

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After 39 months I have tapered off prednisone. Been off for 4 weeks no ill effects

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Thanks for responding. The more positive experiences I hear about, the more hopeful I am. Good news for you and hope it continues. All the best.

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Profile picture for cs48 @cs48

I am suffering from PMR for last 2 and 6 months. GP treated for 9 months starting with Pred 25 mg tapering down to 0mg. After 1 month again symptoms appeared. In June 2024 I was referred to Rheumatologist. Had pred for one year. My Rheumatologist started Methotrexate 20 mg when I was taking pred 5 mg. For last 6 months I am taking 20 mg Methotrexate while tapering pred to 1 mg. I will stop pred in April end.
As per my Rheumatologist long use of Pred is more harmful for bones while Methotrexate may affect liver. I was earlier repeating blood tests every fortnight, then monthly and now after 3 months. It was towed monitor liver, kidney function and inflammation.
My Rheumatologist has advised me to stop pred on 01 May onwards but take Methotrexate 20 mg atleast for 12 months to avoid triggering back of PMR. I am convinced. I am now leading normal life after long time.

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@cs48
Thanks. I am glad to hear this course of treatment to gradually get off prednisolone coming from your rheumatologist as mine thought it too risky. I wish you all the best.

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Thanks. I hadn’t thought of the percentages like that and it makes sense. I think the .5mg taper is good advice.

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I am on 10mg predisone twice a day. Today was told to taper off to 15 mg once a day. In 2 weeks the rheumatologist wants me to reduce it again by 5 mg so I will be down to 10. She’s going to gradually get me off the prednisone altogether. Can’t wait. I’m also on once a month IV drip of Tamara. Today she said it will be for two years. Best of luck to everyone in this group. I can’t wait to continue to read your comments. It’s very helpful to me.!

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Profile picture for laurenand @laurenand

I am on 10mg predisone twice a day. Today was told to taper off to 15 mg once a day. In 2 weeks the rheumatologist wants me to reduce it again by 5 mg so I will be down to 10. She’s going to gradually get me off the prednisone altogether. Can’t wait. I’m also on once a month IV drip of Tamara. Today she said it will be for two years. Best of luck to everyone in this group. I can’t wait to continue to read your comments. It’s very helpful to me.!

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@laurenand typo in my comment. I meant Actemra IV drip once a month for 2 years. It seems to be the norm for PMR

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Profile picture for laurenand @laurenand

I am on 10mg predisone twice a day. Today was told to taper off to 15 mg once a day. In 2 weeks the rheumatologist wants me to reduce it again by 5 mg so I will be down to 10. She’s going to gradually get me off the prednisone altogether. Can’t wait. I’m also on once a month IV drip of Tamara. Today she said it will be for two years. Best of luck to everyone in this group. I can’t wait to continue to read your comments. It’s very helpful to me.!

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@laurenand
Thanks. Very pleased to hear your rheumatologist is aiming to get you off prednisone completely. Seems to be the goal for most. Good luck with the tapering. I am currently down to 2mg from 15mg I feel achey and tired for about a week after tapering and then come good. I’m learning to take it extra easy for that week.

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