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PMR and the taper

Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (11)

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@dadcue

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.

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Replies to "Welcome to the group. The usual suggestion is to increase your Prednisone dose back to where..."

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.