Reducing Pednisone

I have been on Prednisone since March . I started at 20 mg for a week . I went to 15 mg for 30 days, then 12 1/2 mg for 30 days, 10 mg for 30 days, 9 mg 30 days, 8, 7, 6, and tomorrow 5 mg for 30 days until I get to one mg. It has been so successful and a struggle with side effects. I couldn’t walk or get out of bed for 4 days. I am getting better each month. A few aches I get but can handle it. I also have Polycythemia Vera which doesn’t help but I manage and still have my phlebotomy regularly. Hold on and be patient. I walk every day and it’s a great feeling. I am 82 .you will get there ..,.

Don't rush reducing Prednisone. I'm taking the slow road. Reducing 1 mg per month until I reach 5 mg. Then reducing to 1/2 mg per month. I tried last year dropping 1 per month all the way down to 0. But had a flair up. Started again at 10 mg. Everyone is different. I hope this plan has better results.

Hello @pmr52025, I would like to add my welcome to Connect along with @beauty44, @st1300 and others. I think anyone that is struggling to taper off of prednisone might find the following discussion helpful.
-- Hello How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
For both my occurrences of PMR I kept a daily journal of my level of pain when I woke up in the morning and my dose of prednisone for that day. It was recommended by my rheumatologist. When it was time to taper to the next lower level, I either went up half of my previous taper down or went to the next lower dose in my tapering schedule depending on my pain scale being less than 2 which was my acceptable level of pain that I could easily deal with.

There is an upcoming webinar that you might find helpful - Polymyalgia Rheumatica: Closing Gaps in Diagnosis and Disease Monitoring tomorrow, Thursday, September 18 at 6:30 PM Eastern.
Topics covered:
- How PMR is diagnosed and tracked
- Why some patients are misclassified or overlooked
- The role of patient experiences and reported symptoms in care
- Gaps in today’s practices and what can be done to close them

Thank you. This is very helpful and I will watch the webcast.

I am taking 12 now for 2 weeks, then my doctor wants me to go to 10 for 30 days and if everything is ok after my next blood work, I will start reducing 1 mg per month (each for 30 days) until I get to 5. It’s a journey.

Are you on prednisone for PMR? The reason I ask is the area’s of pain you are describing (hands, arms, and back)) are atypical for PMR (shoulders, hips, upper legs). I’ve been struggling with PMR since June and am currently on 20mg (down from 30). In the mornings before re-dosing, I could feel the inflammation creeping back in but it was always the shoulders and knees for me. PMR attacks the joints bilaterally. Could something else be going on?

I was diagnosed with PMR in February and finally got down to 5 mg with no pain. Someone on this board posted the Mayo Clinic protocol for tapering, so I am in the process of trying it. It is a slow process, which I believe is necessary. Perhaps whoever posted the Mayo Clinic protocol can repost it. In six weeks' time, I am now down to 4.5 mg. per day with absolutely no pain. In two more weeks, I will be going to 4.5 and 4 mgs. (alternating daily) for 3 weeks, and then to 4 mgs for 3 more weeks, and then 4.0 and 3.5 (alternating daily) for 3 weeks and then 3.5 for 3 weeks on then on down. The person who put the Mayo Clinic protocol on here did a much better job of describing the process than I have so I hope he/she will put it back on.

There is no Mayo Clinic protocol for tapering that I'm aware of. There are some guidelines that suggest a slow taper is better and to never discontinue Prednisone abruptly. There is no evidence based taper that works well for everyone so an individualized approach is the recommendation. The closest thing that comes to being evidenced based is the EULAR/ACR guidelines that were written in 2015.

I believe Mayo Clinic's guidance reflects and cites these widely accepted practices for treating PMR according to the 2015 recommendations by the European League Against Rheumatism/American College of Rheumatology (EULAR/ACR).
https://pubmed.ncbi.nlm.nih.gov/26352874/
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The current debate focuses on whether or not treatment with long term Prednisone is the best treatment for PMR and GCA. It seems to have come as a surprise to the medical community that so many patients are unable to taper off Prednisone in a "reasonable amount of time." However, there is nearly universal agreement that "long term" Prednisone causes significant side effects.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9113421/#:~:text=A%20gradually%20reducing%20regimen%20of,suggest%20%5B10%2C%2011%5D.