Newly diagnosed with PMR and thank you for all the info here

[Bunchberry]

Hi everyone,

I received a firm-ish diagnosis of PMR this morning, after a 1-week trial on prednisone that greatly reduced my symptoms. I’d say I’m about 60 to 70% better compared to a week ago, if one can really assign numbers to such things. I still have a slight burning in my arms but not painful, and although I wouldn’t go dancing, my hips/thighs/knees are letting me bend down to tie my shoelaces and get up from sitting/bed without pain. So a pretty huge change. I am still quite tired, though.

Thanks to the advice and information I have found here in the last month while waiting for a diagnosis, I was able to actually take in what my doctor (GP) was saying during today’s appointment, knew what I wanted to ask him, and feel confident that he set out a good plan. Even though it is awful to have a disease (this is my first experience with having a chronic disease) and be staring down a long road of prednisone, at least I can feel I’m on the right path. My next step, now that the pain has been relieved (fingers crossed), is to get my body moving again with some mild exercise (keeping in mind what you’ve told me about rest, pacing, and self-care!!!).

The doctor started me on 20 mg, as he said my symptoms were fairly severe — I have nothing to compare them to, of course, so will trust him on that. They certainly felt severe to me! I’ve also started on pantaprazole for tummy protection. Next check-in will be a phone appointment in 2 weeks, and then we’ll look at tapering in a month if symptoms under control. He mentioned going to 15 as a possibility at that point; based on what I’ve read here, I understand that could be too much, so I plan to ask about a 10% reduction. We didn’t talk today about meds/prevention for osteoporosis, but doc says we will address that in future appointment (I take Vit D and calcium already).

So thank you very much to all involved in keeping this site going. I am grateful. As my high school french teacher used to say about upcoming tests, “forewarned is forearmed” and I feel well armed for what lies ahead. And now I am going to pop over to the donations page at PMRGCAuk!

[DorsetLady PMRGCAuk volunteer]

Hi,

The charity has advice on exercises - have a look at this - downloadable … and they will gratefully receive donation - thank you.

pmrgca.org.uk/wp-content/up...

Good to hear there is progress… but would say, as you have already suggested, you need to squash the suggestion of dropping from 20mg to 15mg and, depending on how you feel 20mg-17.5mg-15mg - or better still, 1mg a time.

[PMRpro Ambassador]

There was an online lecture from PMRGCAuk about exercise in PMR at lunchtime today which was recorded and will be available shortly. I suggest you have a look at it when it is available. The booklet DL mentions was talked about - and luckily she was paying more attention than me about where it is!!!

Many manage 2.5mg at a time down to 15 but it is a question of trying and having a low threshold for bailing out and going back to the higher dose and doing a smaller step.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Must have be ESP because I didn’t see this morning’s meeting… was going to catch up on it later..😂🤣

[PMRpro Ambassador in reply to DorsetLady]

Yeah - but you obviously also paid more attention when we were told about it!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

For some things I have memory like an elephant- for others more like a gnat’s… 😏

[PMRpro Ambassador in reply to DorsetLady]

Is it the day of the gnat??????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Seems to be!.

... was going to say like a sieve.. but then thought I’d better keep it in the animal kingdom..and not have mixed metaphors…🤨

..although I probably have anyway…

[Sophiestree]

Your doctor sounds very sensible and a keeper. Good luck with it all. This is the best place to be. I make a donation yearly along with my subscription. Better than any magazine I would ever consider buying myself !

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Well you get 3 magazines for your annual subscription - but the advice and entertainment [?] here is free…what more could you ask for ? 😂🤣

[Sophiestree in reply to DorsetLady]

Haha. So true.... I don't feel my day has started until I have drunk my tea in bed and read the latest posts!!!

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Exactly what I’m doing….😊

[Dorsetdream1 in reply to Sophiestree]

Same here, and as I’ve just restarted Prednisolone 15mg after 2 months without and struggling, I couldn’t sleep last night so had a read here ( I know, not good, white light etc) it is definitely my go to place now for all info PMR related. Thank you everyone for your wonderful, sensible and useful information.

[random901 in reply to Sophiestree]

Absolutely!

[Stills in reply to DorsetLady]

The entertainment element is as good as a prescription 😀