Great site and amazing resource. I've learned so much in recent weeks about PMR.
Short background, female 68, been waiting over 12 months for rheumatology referral. Thought I had FM, knew nothing about PMR but after seeing consultant he said he thought my symptoms indicated PMR. Hands and feet xrayed, range of bloods...all within normal range incl ESR. 4 day 15mg of pred and he said he'd ring to see if they helped.
Life changing within 3 hours. I could stand from sitting, unaided. Step up, bend, lift arms, move head and neck, hip pain gone. Unbelievable. The pain, stiffness etc etc gone and after over two years of unremitting and relentless pain and restricted movement, it was incredible.
Referred back to primary care; 15mg pred for 2 weeks, reduced to 12.5mg for 2 weeks then to 10mg for 2 weeks. Then reduce by 1mg a month. Due to start the 10mg daily at beginning of next week. No probs until a couple of days ago. Feeling great, cleaned the gutters and later that night, burning throbbing pain in upper arms was as bad as it's ever been. It eased next day after pred. Lesson 1 for me; probably did too much cos I felt good. I know the payback but formerly very active, walking, cycling, surfing, gardening and I felt like the person I was a couple of years ago. I guess it doesn't work like that.
I'm struggling with the idea of steroids; side effects are potentially more disastrous than PMR but I've gone for the easy fix. Bliss to have no pain after all this time, but what a knife edge. Taking Prescribed Vit D and calcium tab daily. GP wants me to take osteoporosis preventing med, but after osteo necrosis mentioned, not rushing to that and probably won't take it. I've spoken to dentist and pharmacist who were helpful.
My B12 low for at least 2 years. I don't have any of the risk factors, but seems I'm not absorbing, so likely to be on daily tabs supplement for life. I thought my pain felt like lack of oxygen to muscles, like too much lactic acid which gives a real burning pain. B12 has an oxygen carrying role, so that's interesting, but no conclusive research. Was on statins for about 11 years but stopped a couple of years ago because of fatigue and muscle pain. Cardiac risk for which they were initially prescribed turned out to be nonsense. And one other odd thing, my oxygen sats are regularly 94/95. I'd expect 98/99. I know it's marginal, but it's odd. General health is excellent, so PMR is a real bummer.
I guess what I'm trying to manage is activity v rest when apparently 'better'. I've never looked unwell and don't think those around understand what it means to take 5 mins to get out of bed, or turn over or peel potatoes in tears because the shoulder/ head neck pain is bordering on unbearable. It's going to be a longer road than I hoped.
So, there we go. This is an amazing site and my thanks.