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

Im doing pretty well I have less energy and the doctor ais sending me for a stress test next week. I am also seeing a rumatologist who takes labs each month. The pmr started about the Jan. 1,2021 There is no history in my family.

thanks Ethan.

I'm waiting to see what happens when I get to no more mgs o;f steroid

can anyone tell me how they faired after getting off of steroids. Did you have any further treatemt that helped?

After taking prednisone for almost 3 yrs. I desperately wanted to get off of it. I weaned very slowly from 3mgs. a half tablet every two weeks. When I had been on 1 mg. for 8 or 9 days I could barely get up and down out of a chair and walking was an effort. So much for saying goodbye to prednisone. I am now taking 4 mg. and will try to go back to 3mg. soon. Obviously PMR is still very much with me.

Another update. I dropped to 4mg (from 5mg) last Monday and am noticing more, I’ll call it discomfort, in several areas now. I have had a constant with my R knee and L shoulder but now having both shoulders, hand/wrist pain and some minor back discomfort. I will tough it out and see how I go, but, if it gets worse, then back to 5mg I guess although I may try doing 4.5mg. I have been doing a 1mg drop every five weeks from 10mg.

Down Under, I have a very similar situation. Now on 2.5mg and the old aches and pains are creeping back. I am careful in my reductions but I think I have a wall. The old war wounds are flaring. Knee and lower back mainly. I am always concerned that these areas are just that, old war wounds, from years of soccer, tennis, golf. I feel I will have to find a happy place around 5mg/day and stay there. Its a case of balancing off, how many good years of golf do we have? Do we struggle with pain every day? I am in Canada and the consensus is to get off it, the dreaded Pred. In UK my brother is stuck on 5mg and thd docs say to just stay on 5mg. Admittedly he is now 86 and that may be the decider.
Good luck with your decision.

Same here, I was on 5 mgs for the last six months. Dropped to 4 on October 1st. Pain is creeping back in both shoulders and neck. Definitely not dropping any further any time soon. Planning on calling rheumatologist on Monday just to let her know. Plus my sediment rate has never really come down - it was 86 when first diagnosed - last blood work in September showed 68 so I still have inflammation somewhere .....

My rheumatologist here in Indiana pushed me to get off the Prednisone based on these concepts. My blood work showed no abnormalities, sed rate was way down to three. He said pains of PMR would be in shoulders and hips, pains elsewhere, such as elbows, wrists, knees, and ankles are most likely due to arthritis and/or over doing things. I'm 76, if nothing hurts when you're 76, you must be dead 😂. Doc says your body produces chemicals like Prednisone constantly and half milligram is meaningless. I dropped one milligram monthly May thru September and am now totally off. Some pains, some stiffness, different place every hour. I'm convinced we need to do constant gentle exercise. I walk, but have slowed my pace. I practice Yoga five times weekly, one hour each practice. I'm constantly working around the house or mowing and tree trimming on our two acres. I guess the secret is to keep doing without overdoing. My diet (because of ongoing colitis) is NO alcohol or caffeine, no carbonated beverages, very little beef or pork, mostly turkey or chicken. I eat lots of vegetables and whole grains including oatmeal. At five foot eight inches I weigh 165. Good grief, I've really spilled my guts here 😂😂😂

Dr. Gupta in Great Britain (a PMR expert) is now leaving patients on 2-3 mgs. prednisone. Shows benefit and minimal/no side-effects. Check healthunlocked.com for more info (that's a social network for health issues and they have a large, well-informed group with PMR/GCA).

I cannot imagine "exercise" of any kind! I a tapering from 10 mg. Now at 8 mg one day and 9 mg the next. So far, so good, but my muscles are NOT normal...with any exertion they are WORSE NOT BETTER. This has been true for a long time. Sharon