Right so I have been on this 15mg of pred for 10 days now.
I would say a noticeable start with much of the pain alleviating over three days.
Yesterday and today have been somewhat different with a noticeable return of neck upper back shoulder and upper arm pain
Arguably not as bad as before I started on the meds
Lower body no change.
Just curios to know if anybody else has experienced this
PMR is life changing, pred may alleviate the pain, but it does not mean you can go back to your old life. The mantra is rest, rest, rest. Pamper yourself.
It may indicate that you are not on enough prednisolone. 15mg is quite low on the starting line - between 12.5 and 25mg is the recommendation. For quite a few people 15 mg is not enough to clear out all the built up inflammation prior to diagnosis. In my case, I was started on 20mg, and, after three days, increased to 30mg. After some three weeks, that did the trick, and I was able to begin tapering down.
Suggest you might need to consult with your GP.
Thanks Charlie !
And what did you do as soon as you felt better? Did you try to catch up on what you hadn't been able to do? Being on pred and an improvement in the symptoms isn't a passport to go back to normal living. You have to do your part in this - adjustments to lifestyle are also necessary.
I have to be honest and admit to being a bit guilty of that. Lesson learned !
Most people ask how we knew ... 😅
I'm guessing been there did that!
To be honest I felt kind of uplifted for the first few days. My sleep was not affected to any great degree. I felt I had more energy. Slowly those feelings have subsided, but as suggested I am going to slow it down and see what happens 🙂
I think we two can honestly say we haven't - but we have come across so many who have over the years!!! You have to remember you have an entirely new normal - and it isn't up there with the old one so you have to test the waters very carefully and build up VERY slowly.
As PMRpro asks did you do more because you felt better initially? Many do probably without realising it’s still too much. But you may be one who needs a bit extra [time and/or dose] to get your PMR inflammation fully controlled. So to that end just make sure you rest… and if still no better then advise doctor.
15mg might be the most usual starting dose, but it’s not always enough for everyone..
Thanks Dorset Lady. Yes I felt I could cope with dealing with the endless fall of kea especially in my garden and was out with rake, brush and leaf grabbers.... I've been pretty bad tonight so far but definitely I have learned my lesson over that one. Will see how things go
Gardening has a lot to answer for -as many of us have discovered over the years! Trouble is there’s always one more weed to pull out or one more leaf to rake…
Poor you! This thing does take getting used to. I can wholeheartedly recommend the PMR diaries you can buy from a well known internet book seller beginning with A. You keep a daily log of how you felt on waking, how it progressed during the day, what you ate and what exercise you took. Plus the drug regime. It feels a bit silly to start with but over time you will be proud of how your aches and pains have diminished from a score of 5 to 4 to 3 until they eventually subside. some niggley areas hang on, for me it was my knees, but these things do take time. You can also log blood test results and advice from the doctor. Welcome to the club! Take it easy and think about your diet.
PMR diaries?
Here you go, sample page.
Have you got a link? Never seen that!
Hmmm, funny looking link! Try putting polymyalgia diary in the search box. There are a few different covers and they did change the interior layout a bit between versions, but the daily log is much better than trying to remember, and it's handy to circle and score the areas of pain on the body outline.
amazon.co.uk/Polymyalgia-Di...
It works - bit steep!!! But I suppose you could print a load of pages, or does that work out even more these days?
Yes, I toyed with that, especially when I wanted amended sections, but decided it was handy to have it bound in a book. I have three volumes! Now I just keep a daily spreadsheet with my drug dosage, blood tests and anything else of note, like stressful events. Based on comments in the forum, I am thinking of a new daily record for tapering, noting down the high energy days and the falling asleep after breakfast days to see if there is a pattern emerging.
Could you post it as a new thread so everyone can see it - and make it clear in the title what it is about? I have never seen them before and I'm sure people will be interested.
Definitely. And a rheumatologist we know who is trying to develop outcome measures for PMR! And the charity.
Will do, tomorrow.
I did similar when I had GCA - but as it was fairly smooth once on Pred, not very exciting…all the fun was before diagnosis 🤦🏻♀️
I checked on Amazon.ca, , ChrisBeeLoop and found about a dozen versions at around $10 Cdn which 1. seems very reasonable, and 2. I wish I had found before ! This may well be a useful tool for many of us. ( my own versions get very muddled after more than 6 years ). Thank you.
Nor have I!
Thank you so much for flagging up the PMR diary. I have ordered it right away although I do have a graph type thing on my computer to show the GP if he asks.
Thanks Ambassador for suggesting that I raise my dose from 6.5 to 10 like a flare after being thrown down on my back full length on a bus on 24/10/24. It did marvels of course. GP thinks they are magic but the side effects not so.
I have forgotten how many days I should stay at 10mg. Its the 12th day today. I can cough and laugh now but still have slight pain each side of the breast bone if I lift anything too heavy. The GP said this kind of injury takes quite a while to heal. Christmas should be quite sober and quiet at my sister's country place for 4 days after London! (23 to 28 Dec)
I would be grateful for your advice when time permits. Thank you.
You can stay there up to 14 days and drop straight back to the original dose. If you stay there longer you might need to go down in a couple of steps for comfort but you could see how you go.
Thank you so much for this advice. I will keep it by me when the PMR diary arrives in case there is another flare up. Ever hopeful there won't be any more of course.
Taking extra care on the London buses now - some drivers think there is no tomorrow in the way they drive off before we have sat down. The women drivers are very considerate though and there are more and more of them thank goodness.
Thank you again. I hope you enjoy whatever is on offer in Italy for Christmas.
Wow !
Hi 😊
I just looked at these diaries- not seen them before. I fo like keeping records and also having this might help prevent me from reporting back to my long suffering husband too much! Thanks for this 😊Will order x
Yes, it does seem a bit like having someone to talk to, and it is so encouraging to see progress, albeit gradual.
Thank Chris.... Each day is certainly a learning curve ! Some good advice thanks 😊
I'm just a few months ahead of you. I find it moves around and is different every day. Lately it has been my wrists that are most sore/stiff. I think staying active is good and I walk, run, cycle or swim every day (and have a little nap in the afternoon too).
Yes I agree, there is some suggestion I feel of it moving around. Yesterday I was quite concerned at the overnight difference. Hips were OK but the pain in my shoulders and neck and the terrible headache meant I had to end a meeting with a friend and go home. Yes today its my upper thighs !
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