Polymyalgia rheumatic

I am down to 3.75mg, reducing by 1/4 every 2 weeks. Praying it works for me. Last year I dropped too much, went from 4mg to 3. And had a bad flare so was put back up to 10. So now going very slow. My Dr thinks I am overdoing being cautious, but I don't care. Doing it my way this time. 🤞
Good luck to both of us!

Prayers to you also my friend. Good luck. I am also kind of doing things on my own. I am dropping 1/4 every 4-6 weeks from 3mg. I really don't think the rheumatologists know since this is such a strange disease. I only want to do this once. 🤞🤞

Hello @casinokid1121 and @cajmorrison, Just thought I would chime in with my experience. My second occurrence of PMR has been in remission for more than six years now which is about the same amount of time between my first round with PMR so I'm hoping it doesn't come back. What helped me was keeping a daily log with my level of pain when I got up in the morning (0 to 10) and my dose of prednisone for the day. This was a suggestion from my rheumatologist. If my pain was greater than 2 and it was time to taper to the next lower level, I delayed tapering for a few days to see if the pain got better, if not or it got a little worse I bumped my dose of half of the previous taper down so that I wasn't going all the way back to the previous dosage.

You are so right Carol about listening to your body and doing it your way. You might find the following discussing interesting and/or helpful that confirms what I've always been told by my rheumatologist.
-- 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/
Here is another discussion started by @dadcue that I found quite good for helping to understand PMR.
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/

👍

Thank you for these insights! I am in the early stage of trying to navigate if this is PMR or a muscle injury in my hips and hamstrings. I have a follow up with my GP this Friday and I am going to ask about running additional inflammatory labs and ask for SAA since my sed rate and c reactive protein are normal. And ask about trying a course of prednisone now, or wait. How would you describe the pain of PMR? Sorry if that is a silly question! Does exercise make it feel better? Or worse? Thank you!

Don't rush the taper. I started at 15mg then to 12.5 after 1 month, then down to 10 after another month. I then decreased 1mg every month until I got to 0. 21 days later had extreme flare in my hands and wrists. I couldn't make a fist and had a hard time getting dressed. When I was down to 4mg Dr. said it is osteoarthritis and ignored my complaints. I'm now seeing a different rheumatologist and she said I tapered too fast and put me back on 10mg. I did 10 for two months then alternated 10/5 for two weeks. 5mg for four weeks then alternated 5/4 for three weeks. I'm then supposed to go to 4 for four weeks. I'm still on the 5/4 and haven't had any flares yet.

The pain is not a sharp pain to me; it is more a severe soreness of my muscles when I move them. It was primarily my thighs, triceps, biceps and traps area. I have been on Prednisone close too two years now and have been almost pain free. I have also been lifting weights since I have been on the prednisone. I think it is more of the prednisone than the weightlifting which is easing the pain. If your sed rate and c reactive protein levels are normal, I doubt it is PMR. My levels were thru the roof. I hope my comments help you. Lots of luck.

In my experience with PMR you it hits you quickly and hard. You’re not tired, you’re exhausted, you don’t have a little pain, you hurt all over, you can barely get out of bed, and someone has to put your socks on for you. Prednisone with all its downsides was a savior for me.

Yes, thank you. This helps me immensely as I hear from others regarding their inflammatory labs, type of pain and location of pain. It is great news that you are almost pain free and able to lift weights!

Thank you! That helps me figure this out. That sounds horrible! To be hit with pain intense enough that you can’t get out of bed. And exhaustion. Yes I would be begging for prednisone, as you said, even with the side effects, which I do not take lightly.