Interesting doc appointment

[rachelbell]

Hi

Just got back from docs where i wanted to know results of blood tests for diabetes, cholesterol and inflammation the latter being the most important . Everything was great result . My inflammation blood count has gone from 103 to 3 !!?

So apparently im back too normal ??

I told him i am very very slowly tapering my steriods he wasnt impressed but never mind thats how im doing it 🤪.

Still suffering with lower back and sciatica but hes convinced its nothing to do with pmr especially now with these results . This has given me the lift i needed but interested in what others may think ?

[DorsetLady PMRGCAuk volunteer]

“So apparently im back too normal ??”

Really? …, think your doc needs to learn it doesn’t work like that …..inflammation may be under control -but doesn’t PMR has gone away….

But lower back may be sciatic or myofascial pain syndrome…and may or may not be linked to PMR.

[rachelbell in reply to DorsetLady]

yes said it would be gone by 18 months anyway 🙄🙄 he's not impressed when i quote forum 🤣

[DorsetLady PMRGCAuk volunteer in reply to rachelbell]

oh dear…..well maybe just smile and nod in future appointments.. like many others 😊

[PMRpro Ambassador in reply to rachelbell]

Oh dear - another one of those. Wrong again ...

[borednow in reply to rachelbell]

I was "warned off" this forum by my GP over 5 years ago when he first diagnosed PMR. Thank goodness I didn't take any notice of him - I have learned more and more about this illness from everybody here . My GP has NEVER mentioned PMR again since that first diagnosis, just supplies repeat prescriptions for which I suppose I should be grateful. I have reduced from 25mg to the 1.5mg I'm on now and I will always be grateful to all on this forum. Thank you.

[montebello in reply to borednow]

I'm fortunate to have a GP that actually admitted he was learning from me THROUGH what i was learning through this forum. You folks got me through PMR, and i expect will help me through GCA.

[PMRpro Ambassador in reply to montebello]

I've just been listening to Sarah Mackie - and she was saying how much SHE has learned from patients through the studies she has been doing including PMRVoices. Some of those things which they are working on are things that have come from patients heavily involved in this forum - we do have a voice. Quite a loud one when I am in a meeting

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

🙂me too...listening to SM....

[PMRpro Ambassador in reply to DorsetLady]

I was sitting there amazed at just how much of her opinion now has derived from those of us patients who work with her. Lorna Neill and I have been banging a drum for some years and she has taken it on board and done the studies.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Good for her, let’s hope she, and a few others, can get the message “out there” to those who aren’t as enlightened as they could be.

[Highlandtiger in reply to PMRpro]

Agreed 100%. I took part in the PMR Voices workshops that she mentioned and was so pleased to hear lots of stuff we spoke about there being included in her talk. Patient power!

[PMRpro Ambassador in reply to Highlandtiger]

I've been delighted that a couple of other PMR patients or carers have also started going on about flares and how they happen - I'm no longer a lone voice in the wilderness - and now they know that we can flare while on pred WHEN THE DOSE GOES TOO LOW. So many rheumies believe that that can't happen.

[lewislabrador in reply to borednow]

Im very lucky. Although the ruemy and neurologist don't agree on me having GCA my wonderful GP listens to me and actually taken the booklets sent from the forum to read and pass on to his colleagues 😀

[borednow in reply to lewislabrador]

He's a keeper !!!!