Diagnosed April 2021 with PMR. Struggled for a year trying to reduce (15mg). Just had a good run on slow taper 0.5 mg every 5 weeks. Down to 5.5. Decided to stay at this til Christmas is out of the way.
However I woke this morning with quite severe pain in hips and legs and had difficulty getting up stairs whereas normally I have no problem. I have been doing more in terms of Christmas preparations, cleaning and cooking etc As I want to be fully functional over Christmas - 2 days at least, I’m unsure what to do. My GP has advised me not to increase my dose without having a blood test first to check inflammation levels but that will be impossible to organise in the near future. I
would really appreciate advice on managing this with the least disruption to my steady tapering plan. I’m so disappointed to have been caught out, probably doing too much. Very grateful for advice on how to survive Christmas with minimal disruption to the tapering.
As ever, very grateful to this site and a very happy Christmas to everyone in this community.
Written by
Laineydee
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Add 5mg to the flare dose for 7-10 days and then drop back to the dose where you were good before. But I'd hang around there for more than 5 weeks to be sure it IS overdoing it and not a slowly dripping tap of inflammation. 1/2mg is good - 5 weekly at this stage it cutting it a bit fine.
Wish doctors would realise symptoms are key -not just blood markers -and PMR doesn’t work 9-5, five days a week, or know it’s Christmas other than you’ve done too much in the run up to it!
Hope you soon feel better…and as PMRpro says - just ease up tapering.
Doesn’t matter whether it’s a slow taper or not, although it helps you get from A. to B. more easily - if you still need A. -you need A.
Agree , why are blood markers the be all and end all. I like Lsineydee have painful hips, find it difficult getting up stairs, yet am told inflammation markers are low and most prob just arthritis. Get off steroids asap. As per ‘belated tele con’ . GPs are unbelievable .🌲🎄🌲🎄
As PMRPro suggests increase by 5mg for a week or so, you can enjoy your Christmas and then drop back down again say to 6 or 5.5mg. By the time you get back to where you were before your GP might be available for an appointment or a blood test!!
In fact I was just lying back in my chair having written and posted all my cards, packed up all the presents, put up the decorations and had a lovely lunch after a swim and had a good laugh with everyone.
So if you go up 5 mg. and after 5 days pain is not better what do you do? Do you go up more? I am on pain meds for my non-PMR stuff so it is the PMR symptoms with a chaser of pred. Muscles weak. Should I go.up even more? .or just deal...though it's very hard. I am at 28 right now. Soon I will be cleared for Actemra for my RA and PMR if my labs are clear but it could be weeks. Anyway if you or any of the other wonderful experts can advise I would be grateful. My cards snd gifts are still hete in a box anfmd plans cancelled...so.I am laying low. Thank you. Happy Christmas. 🎄🎄
5 days is a very short time - dealing with a flare by adding 5mg is for up to 10-14 days. But if 28mg isn't managing presumed PMR - it may not be what it is. The more you go up - the further you have to come down,
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