Hello, having been previously fit and well, I was surprised to have a an ever increasing amount of severe pain in my shoulders,hips and wrists in July 2022. Blood tests showed high levels of Calcium and a diagnosis of Hyperparathyroidism was made. However pain increased despite very large painkiller doses and I was eventually diagnosed (after many many diagnostic tests ) with PMR in December. I am on my first course of redusing prednisolone and and was beginning to improve, however now having increasing pain in back and left hip. No consultant input until July for either condition so am hoping reading posts and FAQs may help me learn how to cope better with these 2 conditions. Any advise on whether exercise where you push yourself even while in moderate pain has worked for anyone. Thank you
gardenergirl1947: Hello, having been previously fit... - PMRGCAuk
gardenergirl1947
No - NEVER push yourself when you have PMR and especially not if you are in pain. Your muscles are delicate because of both the PMR and pred and it is much easier to develop DOMS (delayed onset muscle soreness) which will then take a long time to resolve. It can even lead to a flare.
When you say you are on a first course of reducing dose of pred - what do you mean? If it is PMR you need to be at the starting dose of 15-20mg for at least 3 weeks before even thinking of reducing the dose and then only by 2,5mg and stay at that dose for 3 weeks again.
Thanks so much for your help, I should have explained better but am still feeling overwhelmed with all the changes to my life. Yes I did start at 20mg in Dec 22 straight after diagnosis and am now down to 7mg daily with further monthly reductions by 1mg . I really thought that you did a period of about a year on steroids and then you’d be better but I guess that was naive, back to the reading up, and trying to find out why my hip pain has returned, but it could be due to my hyperparathyroidism which can cause aches and pains.
I also managed to get down to 7mg quickly and assumed it wouldn't be long before I was through PMR and out the other side. However, the symptoms returned at 7mg and I had to increase. This has happened twice more and it's a slower reduction this time - not a naturally patient person and previously fit it takes time to learn patience. Now 1 year and 9 months on and now on 8.5mg. I know it will take at least the rest of this year if not longer to get anywhere near under 5mg. Hard to come to terms with sometimes but it won't go away. Lots of really experienced people on here to help you with much more useful information than I can give. Best of luck and keep in touch.
When you repeatedly flare at a similar dose it is your body telling you you have arrived at your destination for now - the lowest effective dose at a given point in time. It doesn't mean you won't get lower, just not yet. And provided you take note of the signs you are flaring quickly, a week at a higher dose (add 5mg to where you flared) and then returning to the last dose you were good at is usually all you need to do, not go back much higher and taper slowly again. However slowly you taper you won't get past that lowest dose. You need what you need.
No - sorry! You start on a dose that is too high for what you will need, have a good springclean (so to speak) to clear out the accumulated inflammation and then taper the dose slowly, also called titration, to find the lowest effective dose, the lowest dose that gives the same relief from symptoms as the starting dose did. The symptoms are due to an underlying autoimmune disease that makes your immune system attack body tissues as if they were foreign bodies. The pred only relieves the inflammation and that stops the symptoms but it has no effect on the actual disease process and that chugs away in the background which is the reason you still may feel fluey or weak and wobbly - bit like permanent flu. For most people, especially with GCA, it eventually burns out and goes into remission, When that happens you are able to get off pred altogether with no return of symptoms. In PMR it is more resistant quite often and lasts longer for many, with a very few having it for life - we find 4 or 5 years is very common for PMR (even if the doctors don't think so!). But with a few adjustments most of us are able to live a reasonable life. It hasn't really stopped me doing a lot of things and I'm a Long PMR-er!
No wonder you are bewildered -PMR obviously not explained by doctor and reduction very quick -13mg in 4months is bonkers.
At higher dose your hip pains (whatever the cause) would have been masked by Pred - now you are low enough for it to resurface.
Hi and welcome,
Couple of links — if you haven’t already come across - one general intro/info post and one on exercise -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Thank you for the links, I probably need to do more reading up on this whole thing, I’ve been in denial since Decembers diagnosis and unwilling to give up on my normal activities, my lovely garden and nice country walks, I shall read these links and then return
You can -and should continue to do the things you love (for your medical health) -but you need to adjust your physical activities to take account of your illness,
So shorter walks, not too long gardening at any one time -and plenty of rest in between to give your muscles time to recover.
Hi Gardenergirl1947,
Two of our 'experts' have already offered the advice you require and I just want to say please heed that advice.
PMR is a condition that does not respond positively to excess physical activity and is most definitely not a condition you can improve by 'pushing through' the pain & discomfort with exercise.
I tried that and it most definitely didn't end well!
If you're in pain, then that's usually an indication that your PMR is not under control, that it is still active and your steroid dose is not enough to control the inflammation.
With this being the case, any further 'stress' on the body will cause further consequences.
That's not to say that you can't exercise...it just means that any exercise you undertake must be within your capability, very gentle and not enough to trigger a flare.
I'm 4yrs into my diagnosis and only now am I able to gently push myself when at my gym. I know my limitations and I know the warning signs to look out for that tell me to slow down.
Please do read the links from DL, and then re-read them, and maybe print them off and take them to your GP or whoever is prescribing your pred.
Many first posts on this forum tell tales of insufficient Pred to start with and then too fast, or too great (or both) reductions. You need to start on a dose that gives you at least 70% relief from the pain and stiffness. Then stay on that dose for at least 4 weeks and don't think that you are cured and start your normal hectic life again; you are not cured - the drug is taking away the daily inflammation that causes the symptoms but the PMR is still active.
Then, when you think you are in a good place, reduce the dose by no more than 10% and use a tapering plan over at least 4 weeks. Then stay on the new dose for 4 weeks before starting to taper again. You really want to avoid the symptoms returning to the extent that you have to increase the dose and start all over again.
Good luck!
💐sending very best wishes to you!X
I'm pushing at moment on ankle knee and hip. Walking a bit further but it's hard
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