Polymyalia Rheumatica

Hello @havana, Welcome to Connect. PMR can definitely be a challenge doing some of the things we take for granted in our normal daily lives. If you haven't already seen this discussion, it might be helpful:
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/

My PMR has been in remission for a little over six years now for the second time but both times it was active I was started at 20 mg prednisone and was pretty much pain free after a few hours of taking the first dose until the next morning. My pain level when I woke up in the morning was generally about a 1 or 2 on a scale of 1 to 10 and went away again after taking my next dose. Another discussion you might find helpful for tapering off of prednisone:
-- 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/
You mentioned you are new to PMR and currently at 15 mg tapering to 12.5 next week. Did you start at 15 mg? How long have you been on prednisone?

Hello , I started on 15mg nearly 4 weeks ago after being diagnosed.
My specialist advised me to cut back to 12.5 after 4 weeks which is next Friday.

You might want to have a conversation with your specialist if it's not controlling your pain well and it's time for the taper. My rheumatologist had me keep a daily log with my level of pain in the morning when I first woke up and the dosage I took for the day. He always let me decide the pain I could tolerate and for me that was a 2 or less on a scale of 0 to 10. If it was higher than 2 and it was time to taper to the next lower level, I stayed at the current dose for a few more days to see if it was just a minor flare. Each of us are different when it comes to tapering and there really are no set rules like the discussion I mentioned above says.

I too had never heard of PMR until I was diagnosed three years ago. The pain I was experiencing was worse than I everything I thought I knew about arthritic pain. Methylprednisolone helped tremendously in the beginning. One relapse later and many prescriptions of prednisone I seem to be doing just fine! I’ll be off all meds soon and looking forward to seeing if I relapse again! I pray I do not.

My theory on management is go to a higher dose for relief and then hold for a week or two before planning the tapering.
Be proactive and take steps to monitor and mitigate
side effects of long term therapy if necessary.
Know your lab numbers and be aware of systemic
inflammation and cardiovascular risk profile.
Work on diet moderation and walk as much as you are able. You can check your blood pressure and glucose at
home. Sleep hygiene, vitamin D and calcium supplements are all important.

If you are having pain in the morning and not later in the day you might want to consider splitting your daily dose am/pm. I initially had pain in the morning when I started Prednisone but instead of increasing the daily dose I took 75% of it with breakfast and 25% with dinner. After that I was pain-free all day. I'm now tapering from 22.5 mg/day to 20 with the same split without any pain, ...yet.

Neither have I

I can’t help but comment as I read your story. It is the exact experience I have had. Such a shock and an adjustment. I’m a little bit ahead of you at 9mg. Not looking forward to the pointy end of the tapering but continue try to live a good life in the “new normal”.

Your symptoms are all very typical for PMR, and very much like what I experienced. Some people sail through the tapering process, others have a rougher go of it. There’s a balancing act about not wanting to overdo things in terms of exercise and activity, and not weakening yourself so much that you create new problems. Everyone has to find their own way through this. It’s good to have a community of people who understand what you’re going through. Best of luck.

How do you manage the fatigue while travelling - particularly if you travel overseas and have jet lag thrown into the mix?