Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Sorry to hear but good to know we are not alone. I developed bilateral lumbar pain as my 1st symptom after being in bed for 13hrs with a high temp after 2nd Pzr vaccine. I thought it was from working out. It spread to bilateral hips, a knee then finally my shoulders with in 11 wks.

Hi - me too. Within 24 hours of receiving the Pfizer. Never had PMR before. Started on 20mgs and now down to 10mgs of prednisolone. I wish you well - the unknown is very frightening. Fingers crossed for a full recovery. Good luck

I had my first PMR attack 13 years ago. It resolved completely after more than six months and did not return until after the Pfizer shot. I wish you well and hope you recover soon.

I have a question for this group. Yesterday I went to my rheumatologist again. I've been tapering prednisone since last August from 20mg and am at 4mg now. It's all going along well. All my numbers are good for bloodwork except my Rheumatoid Factor (RF) is just over 50. Five years ago when I was getting over my first bout with PMR my RF was over 60. I was doing well for almost 5 years. This year I have had my hands twice and feet once x-rayed looking for arthritis or something and the reports came back negative. I have one swollen finger joint on my right hand and one knuckle on my index finger on my left hand. A bump over a toe knuckle. My rheumatologist thinks they just didn't do a thorough look at the x-rays and he would like to put me on something for RA.

I am wondering if I should be starting on any RA drugs and what people on here think about that. He was suggesting it five years ago and I didn't like the idea and never went back once I was through tapering. I'm thinking that is what I will do this time. I don't want to take a drug for something I don't really need.

I'm 68 years old and feeling pretty well most all of the time. No stiffness morning or any time of day.

Any comments appreciated.

Thanks,

I was successfully treated for PMR with 20mg prednisone for 3 months, 15 mg for 1 month, 10 for one month; then down 1 mg per month until zero. No pain or stiffness during treatment or after. 10 weeks free from prednisone, my second Moderna vaccine caused a flare up. My doctor has started me at 15 mg prednisone, which doesn’t quite do the trick. I still have some pain in my thumbs, nearly all day. I have only been taking prednisone for 1 week at this point. My question is is it better to take less prednisone and deal with some pain, or take more and knock it out? Perhaps some of you know from experience.

This is such a great question and I haven’t seen it addressed well. I can tolerate pain/stiffness, but am fearful of GCA. I don’t know if having some pain/stiffness leads to a greater risk of GCA. I am on 5 mg now, was on 4, but had to increase to 6, now 5. (Interestingly, the increase to 6 was in the month I had 2 doses Moderna, so probably some effect). This current bout of PMR started about 1 1/2 years ago about 3 weeks after a cortisone shot in my knee.

I think we think alike. I want to knock PMR out of my system; then taper. My dr just messaged me to go up from 15 to 20 until my next blood test (3 weeks). If it were pain elsewhere, I might not increase, but I’ve lost my opposable thumbs. 😊

I had the AstraZeneca first dose am currently tapering and done to 2 mg I had no bad effects from the vaccine. Maybe that variety is better for people with PMR ?

Wish I could offer some advice but am new to PMR myself. There vaccine is clearly a trigger. I
Was started on 20 mgs for 2 weeks, 15mgs for 2 weeks, 10mgs for 6 weeks and then am being taken down to 5mgs/10mgs on alternate days . My rheumatologist is in favour of slow tapering to avoid a flare up. 🤞it works. I have also been advised not to risk my second vaccine.
Good luck with everything. I hope you recover soon.
It’s reassuring to know we are not alone!

I asked a friend that goes to the same rheumatologist I do about RA drugs and her answer was CBD oil.