Just Been Diagnosed with PMR

Welcome @cherylpeg, Sorry to hear you have been diagnosed with this nasty condition. It pays to learn as much as you can about how to cope with PMR and taper off of the steroids as you can get it under control and into remission. Here are a few discussions that I think will help you learn more about how to manage getting 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/
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- Resistance Training and PMR: https://connect.mayoclinic.org/discussion/resistance-training-and-pmr/
-- PMR and exercise: What helps you?: https://connect.mayoclinic.org/discussion/pmr-and-exercise/
-- PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/

One of the things that helped me taper off of prednisone was keeping a daily log with my level of pain when I got up in the morning and my dosage of prednisone for the day. Do you keep a daily log or track your pain?

When I was diagnosed with PMR/GCA, I tried to get out and do a short walk every day. I did as much as my body would let me. I never overexerted myself.

I've been taking Actemra infusions every 4 weeks, since mid-January. My aches have been mild. Mostly, in my wrists and back of my right knee. I have re-gained much of the stamina I had before PMR/GCA. I don't live with the fatigue that I used to have.

How much are you taking? I was put on 10 mg/per day and it took me three weeks to be symptom free. Exercise only exacerbated my condition, but there is much variation with PMR. Whatever works for you!

20 mg for two weeks; 15mg for one week than 10mgs.

No, I have not been keeping a log. Now, I basically have pain when I try to lift my arms, and I have limited range of motion.

My Rheumatologist upped my prednisone by 5 mg for two months because I was still in pain in the morning. Then decreased 2.5 mg for one month and then decreased another 2.5 mg. It seemed to work well.

I think it varies for everyone. I was started at 15 mg daily October 2024, with little effect, then 20 mg daily, with little effect. The rheumatologist increased it to 40 mg daily, and I started feeling better, but my CRP was nearly 60 even with all the prednisone so I was prescribed weekly methotrexate along with 40 mg daily prednisone end of December 2024. I started feeling much better by February 2025, and once my CRP was normal I was put on a prednisone tapering schedule (still taking methotrexate). That went well until I got to 15 mg daily, then pain and stiffness returned and my CRP was higher than normal again (about 2 weeks ago). So I'm on 17.5 mg daily for now, hoping I feel better soon. Good luck to you, I hope you feel better soon

I hope you feel better soon! For me, pain relief was fast but would come back overnight and start over. My dr advised split dosing and it was like magic, felt 85% all day and night. She had me taper quickly ( every 2 weeks, 15 to 12.5 to 10, then 1 mg reduction) until I hit a wall at 7 mg. Now it’s 1 mg monthly and down to 3 mg. After 9 months. With the monthly reduction I feel fantastic, can’t even tell I have a condition. Here’s what worked for me: 1) keep moving every day even if you’re sore. 2) do everything you can to minimize the side effects of prednisone (anti inflammatory diet, lose weight, no alcohol, daily exercise) 3) get vaccinated to avoid other illnesses- prednisone absolutely makes us have more and severe infections 4) lift weights to help minimize muscle and bone loss. Even light weights make a big difference. 5) don’t think of yourself as “sick”

My situation is very similar to yours, its been almost a year. Keep living as fully as possible. I have been on 2mg for three weeks now and am starting to feel as good as I felt on 3mg. Same happened from 4 to 3. Takes a while for the body to adjust to less prednisone. No need to rush reducing the prednisone if things are going along okay, reducing 1mg every month. But I do get tired easily. I can dance for about two hours max. Also got to the gym and go rowing and work in the garden.Age 66male. Biggest remaining symptom is sore hands but that may just be arthritis. I will get that checked out after I have been off prednisone for a bit. Cheers.