I have had pmr for almost 2 years
I started on 15 mg prednisolone and tapered down to zero by April of this year
I was pain free for a while but over the past couple of weeks my arms have been sore and heavy
This usually starts to get uncomfortable in the evening and is pretty sore by bedtime
By the morning it's ok again
Is this the pmr back again?
It's not the same as before when I had pain from the morning
It's interesting that your pain is gone by morning. Are you more active than you were? Maybe your muscles are still intolerant of certain exercise. I suspect mine will take a long time to fully recover after pred zero, whenever I achieve that. Also, your journey was pretty fast, really. I expect some will suggest that you might still be needing a very small dose of pred. My doctor (and I must remind her of this when I see her next) told me at the beginning that some of her patients keep a supply of 1 mg tablets on hand even once they are off pred, just in case they need it from time to time. I think eventually the need for the little top up diminishes and slowly fades away. Kind of an extension of the famous dead slow nearly stop tapering plan.
What a good idea. I wonder how long we should take the 1mg for
She implied one just took the 1 (or even .5) mg whenever one felt a need, in other words occasionally. There was no particular pattern. Now that I've been tapering for some time, and at present to 1.5, I can understand how that could work. At a certain point you'd realize you hadn't felt the need to take any pred for a long time.
It sounds like an odd way for it to return. Do you do anything heavy or repetitive in the day time. You are not lugging around a small grandchild or anything?
I guess you still need to build muscle strength up after PMR. Perhaps a physio could help.
I sincerely hope it's not trying to creep back. If you become more sure you'd better jump on it quickly with Pred before it can really take hold. Fingers crossed!
Hm I've been gardening and wondering why I need two hands to pull up the weeds 😳
As the pain builds during the day and resolves after a night's rest, it sounds unlikely to be returning PMR. Have you been expecting those arms to cope with all they did pre-PMR? If so, they are telling you that they aren't ready this soon after reaching remission. It can take up to a year for our bodies to return to normal after coming off steroids - our muscles can be weakened and those steroid-weakened muscles will rebel if pushed. Meanwhile, gentle stretching exercises can help, perhaps with an easy-stretch theraband or under the guidance of a good physio who has an understanding of PMR.
Thanks for your reply which makes absolute sense .I will slow down on all the gardening I had planned
It could be - but it isn't typical at all. Like Heron - I think I might suspect you are doing more than you think and your muscles aren't recovered from PMR and/or pred. It is said we need a good year before everything is back to normal after getting off pred.
And having read the entire thread - GARDENING???????
Oh should I not be gardening? No wonder I'm exhausted 😩
I was replying to your original post and hadn't read the stuff in between - it answered why you are having problems by evening!
Nothing to stop you doing anything - just know your limits and stick to them! Do too much and your muscles will tell you about it as they remain intolerant of acute exercise. Start with a little and you will be able to build up the amount - but dive in and try to behave "as usual" and you will suffer. The pred is managing the symptoms - no more, it has done nothing to the real illness. That causes fatigue - and you have to manage that by pacing.
There are links in this post tat may help you understand:
pins and needles in hands, and pain waking me at night now
First split dose last night. No pain ,no stiffness, NO SLEEP! ☹️
cramp like pain at night from left buttock right down leg
