PMR and the taper

Welcome to the group.

The usual suggestion is to increase your Prednisone dose back to where you didn't experience the pain but not all the way back to the beginning. The "lowest effective dose" is what you are striving for.

The typical taper recommendation is to decrease by 1 mg every 4-8 weeks when your dose is less than 10 mg. Some people say that decreasing by 0.5 mg increments every 4 weeks works better. I agree it gets harder the lower your dose gets after you get less than 10 mg.

I personally think how you taper depends on many factors. How well you tolerate the side effects is one factor. How well you tolerate the pain is another factor. If the pain is tolerable ... maybe stay put and not taper at all to see if the pain gets better.

Another factor is when the pain is the worst? If it is mostly "morning pain" then splitting your dose might help. Take most of your dose in the morning and only part of the dose in the evening. The total dose stays the same but just split up into 2 doses. Check with your doctor to see what they think or if they have other suggestions. Some doctors suggest "alternate day dosing" but that is hard to explain.

Getting discouraged won't help. That just makes everything seem worse. I got very discouraged during the 12 years it took me to get off Prednisone. I know how hard it seems when you get discouraged. I can only encourage you to keep trying and never give up.

I was able to get off Prednisone when a biologic was tried. It still wasn't easy but you might want to ask about a "steroid sparing" medications. There are conventional steroid sparing medications like methotrexate or leflunomide. I tried the conventional ones first but eventually graduated to a biologic steroid sparing medication.
https://www.the-rheumatologist.org/article/study-most-patients-with-pmr-arent-getting-steroid-sparing-agents-in-first-2-years/
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Steroid sparing medications are also called Disease-Modifying Antirheumatic Drugs or DMARDs

It's common to start with conventional DMARDs like methotrexate or leflunomide to manage PMR, and then progress to biologic DMARDs if those don't work. The biologic agent I used worked extremely well and I was able to taper off Prednisone completely.

@greysky, I would like to add my welcome to Connect along with Mike @dadcue and others. I thought I would share another one of Mike's discussions that I found helpful since I know it can be discouraging when you begin the journey with PMR.
-- 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/

I recall being similarly despondent at the same 8mg point when some morning pain and fatigue surfaced. @johnbishop 's recommendation to record a pain level each morning (1-10 scale) was one of my guiding factors, as was my own observation that there was sometimes some slight achy-ness for a week or so after reductions, which passed.

Everyone is slightly different and will make their own assessment, but I increased dose for a few days to 9.5mg, then dropped to 9mg before resuming the tapering.

PMR takes a while to resolve and prednisone is not curative, it just holds inflammation and pain at bay while the body recovers from the PMR. Maybe you had reduced a little too quickly, maybe it will take a week or two to adjust to the new dose, or maybe you need a small increase to keep the inflammation/pain controlled.

Tapering down is tricky. My Dr has me alternating for about a month and then when my body gets adjusted to that I can go down one more mg.
Example: If you are on 20mg and want to drop to 19 mg, just do 19 every other day until your body adjusts. It can be a slow process but slow and steady wins the race. Since you are at a level where you have pain just go to the level that takes care of the pain and then in about a month start alternating 19mg one day then 20mg for about a month. Keep it gradual. I have had to do the same thing.

Try going back to 9mg. You can always reduce again later. take a Tylenol . Stay active and stretch. Try a swim or plunge in cold water. Get in a hot bath. Usual things for sore muscles. Complain loudly while nobody is listening. Take two naps a day. Watch Loudermilk on Netflix.

Megz ….Thank you for your insight !! I am sooooo happy I’ve found this support group for PMR

@greysky …
Below 10, it is generally accepted protocol to taper by 1. If you are tapering by 2, that alone migjt be the cause of your discomfort.

Thank you Mike for all the important information that you have given me 🙂 ,
I was dx on 12/28/24 and it seems like a long time ago, however after reading all the comments I’m getting a better understanding of what is happening . I really appreciate you care & concern.

Thank you for your support and a bit of much needed humor on the subject !!
Appreciate your help

John Thank you for the welcoming!! I will read the articles and the information here is incredible, appreciate the care and concern that everyone in the group has ~