Can someone explain the science? When I got GCA, it was straightforward in that I started at 50 mg prednisolone and the symptoms disappeared. I reduced slowly and with a few minor blips, got to zero. PMR which I now have seems more complicated. I am coasting at the moment at 2.5 mg and for the most part am fine. However, although I can't say I am in any kind of major agony I don't understand why today I am very stiff and sore around the middle and right shoulder. Yesterday was our Carol Service (I sing soprano in the choir) and it all went well. Was it stressful? Probably a little as we are a small choir, ageing and still try for all those descants that one likes to sing at Christmas. So how does that little bit of stress equate PMR stiffness?
Why do I hurt?: Can someone explain the science... - PMRGCAuk
Why do I hurt?
Interesting, isn't it? I'm not so bad now after a couple of years hanging around 2-3 mg, but I remember often feeling exhausted after a pleasant coffee morning or lunch with friends. I think any kind of stress, whether "good" or "bad" affects us. Be kind to yourself today and rest a bit more than usual.
I am always looking for some sort of pattern to explain good days and bad days and there doesn't seem to be any rhyme nor reason. Should probably just got with it and make merry. Tis the season!
I'm the same. I keep a dairy to try to find the cause and it totally defeats me there is no pattern I can find.
Heron it doesn’t seem fair does it. Even a nice time can render us all weepy and unnecessary. But you are doing so well Heron cxx
I'm also at 2.5mg daily, and I find that the PMR fluctuates all the time. About three weeks ago I was contemplating a two to three mg increase because of increased stiffness . Then all of a sudden everything seemed a lot better, and I stayed where I am.
Some days I am more tired than others, and just have to take it easy. It's all very frustrating, but that's what PMR is.
Good luck
Paddy
Paddy you have a great attitude I admire you.
Were you sitting in a draught? I was at a reunion a few weeks ago - and one shoulder protested wildly although I wasn't really aware of the draught until OH mentioned it! Did you support the music more with the right than the left hand? Stand squint? And choir pews were never the most comfortable place to sing...
We do have a mystery draught in the choir but it comes from the left not the right. My right shoulder has always been the first PMR annoyance so not surprised it is sore, just wish I could understand why. It's frustrating when you think you are doing all the right things.
Take it from me....however much you think...you are never doing all the right things 😳.
My answer...just do what you enjoy (within reason), but be prepared to suffer a little for it afterwards.🥳
Ce la vie!
So mulled wine at the ready!
🍷cheers!
I am wondering if I can ask a question as I see you are a volunteer but I have to see a rheumatologist next month and may have to start on Pred but I also have afib a heart problem but have read that these drugs effect your heart and was wondering if you know if that’s true as I know from experience Drs do not always know what effects afib as one of my own Drs wanted me to up amitriptyline which the cardiologist had said no to a that effects afib
Yes I am a volunteer but that doesn’t meant I have any more knowledge about medicine in general than others. I have a lot of personal knowledge about GCA, and have been on here for a long time, and I think it’s the administrators way of saying thanks for that!
Pred certainly can affect blood pressures, but there are many on here who use amitriptyline for sleeping. There are also some who have A/Fib.
Suggest you raise a new thread, that way you will get answers from others in similar situation.
Thank you x
I have paroxysmal atrial fibrillation - and the cardiologist is confident that, since it started around the same time as the other PMR symptoms, it was caused by the autoimmune part of PMR damaging the electrical cells. Last spring I had a flare of the PMR and had to go up on the pred dose from 5 to 7mg to get the PMR bits under control - but a month or so later reaslised my previously very well controlled a/f and some associated episodes were happening more often. At 8mg it was much better and at 9mg gone almost entirely. Then in the autumn I had a further surge of PMR symptoms - and the a/f got worse again. After discussing it with the cardiologist she said she couldn't offer anything more with her medication, if a higher dose of pred managed things then it was obvious the vasculitis was involved and that was the best thing to do. So I am back at 15mg/day pred - and the a/f is no problem at all. If I go down to 14mg for more than a few days it is back.
But DL is right - start a new thread and probably more people will tell their stories.
Thanks for replying my problems are all around my neck and shoulders and although the neurologist has said my pain is peripheral neuropathy my own dr is sending me next month to a rheumatologist as she thinks it could pmr although the blood test she done has come up negative but she has said with some people it can so if prednisone can help with the pain I’m in I’d be glad so from what you say it could possibly be ok to take my own dr has mentioned Pred but wanted me to see the rheumatologist first I’m on pregabalin which have balance and vision problems for me and is t really helping me so once again thank you for your reply
At least you have a well informed GP! Keep in touch and tell us how you get on.
To quote my nan, were you in a draft, that was her answer for any stiffness .
I find that when I sing properly, my breathing muscles ache, especially when holding long notes. I'm a top sop too and when I stand with the correct singing posture, everything aches as I'm usually a bit of a slouch. I don't notice this at the time but feel like I've been at the bottom of a rugby mail afterwards. So enjoy the glor-o-o-o-o-rias and merry Christmas 🎶🎵🎼🎹
Merry Christmas Angiejnz! Thanks for the laughs. Let’s hope next year is a good one.......
So if I slouch at midnight it will be better? They will probably think I've been into the wine and that's before communion! Merry Christmas!
Pre-performance tension could certainly increase the stress but some stress seems to be a kind of stimulant - all to do with adrenaline levels I suppose. I'm sure your audience enjoyed those descants; I always wish my voice was good enough to join in at Christmas but when I used to try my daughters and husband - all good singers - used to give me 'please don't ' looks but I do love to hear others. Take care of yourself and have a good Christmas and relax as much as you can.
I agree with you; there seems to be no rhyme or reason to hurting days vs. good days. ; You are doing the right thing by staying active and continuing to participate in an activity you must enjoy. But shoulders are very vulnerable. Anytime I am physically active, I hurt during and after. Am on 4 mg. Prednisone. You are not alone. My hips are very stiff and even a short walk knocks me out. My New Years Resolution is to return to reasonable e exercise and lower calories.
Age and cold weather doesn't help.
I admire your spirit; distraction is the best the therapy. Very happy holidays.🎄🎁
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