Where have you experienced pain due to PMR?H

I have been in remission for about 4 years. No flare ups but my dr. Took me down very slowly. And I think that was what kept it in check. Took 2 years on Prednisone. Very slowly process, but it worked. Keep smiling everyone.

Would love knowing your taper routine. I can’t seem to get below 5 mg without uncomfortable symptoms returning. I’m on 3 weeks of 4 mg then 3 wks of 3 wks etc till I’m off completely. But at 3 mg I’m in a lot of discomfort.

I don’t remember exactly, but I believe she (my doctor) keep each mg drop for at least 2 months. Say 2 or 3 months at 5 then same for 4 etc., etc. are you seeing a Rumatologist, or are you trying to do this on your own? Maybe you need to go back to 5 mg, and start the drop very slowly. Don’t be in a hurry to get off. You don’t want the pain to come back. That is like starting over.

My PMR was weird. As long as I didn’t move my arms and legs, I had no pain. As soon as I moved an arm or leg, even a fraction of an inch, I had pain, but once I stopped moving the arm or leg, no pain. Hands are different—pain regardless of whether I move or not.

Same here my hands always hurt like a toothache

Was just noticing the same regarding movement but my hands are more stiff, not painful.

It is a weird disease. Sometimes before starting treatment, I had to use one hand/arm to hold onto the other hand/arm just so I could get that hand/arm
where I wanted it to be. Double the pain, double the misery! I am going to need PT to get my strength back.

I have PMR, with intense pain. I’m on 15mg of prednisone. I was on 30mg and tapered down to 10. I started using Kevzara and the flare ups seem worse and more intense. Especially at night. My wrists swell and have lunps. My knees hurt badly and at times my arms do too. The pain is so bad, I don’t get any relief. I know I could increase the prednisone but I need to have heart surgery so it’s not the best option.
My doctor suggested physical therapy, has anyone tried it.

Mine came on overnight. Couldn’t lift arms stand up move. Wait awhile and was able to get to bathroom. Got a little better by noon. Took lots of Tylenol. Same thing every morning for 3 days. Went into doctor. Evidently doctor notes say possible PMR but she gave no treatment no recommended anything. Internist. After a month of aggravating pain went urgently to my ortho who immediately dx as PMR and started me on 20mg of prednisone and got me in to Mayo Clinic. However 3 1/2 years ago Mayo only treated this with prednisone. Perhaps they have they have updated protocols. My primary areas of most pain is large joints and large muscles near the joint. Shoulders hips knees thighs biceps and right temporal headache. I have always in my discussions with my physicians stated this condition was caused by my Covid 19 shot/vaccination and/ or in conjunction with the Covid 19 virus. Whether or not they documented this is unknown. I don’t think the MRNA is my friend either and every injection I have I request a MRNA ingredient check before I get any shot administered.

I was so glad to read this, because I am having terrible pain in my calves and stiffness when I walk, it's like the Tin Man of the Wizard of OZ. I am on 15 mg prednisone and this started about 4 days ago. Up till then, it was pain in my shoulders and overwhelming fatigue. I also have other weird symptoms, like heat radiating from my hands and upper arms. I guess if it's myalgia, it can affect your muscles as well as your joints.... Anyone else experiencing the calf pain or heat in the hands, arms?