update following my post to Dartmoor Sunday

[seamaid]

I have had a face to face meeting with my Rheumatologist today, The first one since being diagnosed the PMR last August 190th. he did query why I was on 9.5 mg of Preds as he said, the protocol was 1 mg per month straight down , I explained, thanks to him, I had found this group and that surely 1/2 mg per month would lesson the danger of a flare and that I liked slow but sure. he laughed and said If I, and my GP he was happy as well ! he will leave me with my GP to look after me but he would be more than happy to see me any time

I them asked him about the trouble I am having with my lower back as paracetamol just was not any help at all. upshot on that was that it was not related to PMR so it will be back to GP on Fri as he wants to see me then anyway. I am thinking it could be some more Osteo Arthritis which I have in y knees etc plus a history of # coccyx . anyway I came away happy, he listened with me and we " Discussed " it

[PMRpro Ambassador]

"the protocol was 1 mg per month straight down "

He thinks does he!!! You are NEVER reducing relentlessly to zero. The process is called titration to identify the lowest effective dose for YOU - which isn't likely to be the same as the previous patient or the next patient. PMR is a chronic disorder - not one where you crack the inflammation over the head with a dose ofpred and then taper off. You find the dose you need to provide decent quality of life until the underlying autoimmune disorder burns out. Which might be a year (exceptionally) or 4 or 5 years (much more likely) or even longer. No other autoimmune disorder behaves like that - why should PMR? Unfortunately, pred is the only reasonable option for MANAGING (not curing) the symptoms - and you need what you need.

[seamaid in reply to PMRpro]

it is thanks to you and DL etc That I knew that and was able to respond I would be totally at a loss if it were not for you all 😀👍

[PMRpro Ambassador in reply to seamaid]

You'd think they might realise it - but no, they persist in following the same misguided paths and making patients suffer!

[SnazzyD in reply to PMRpro]

It’s never the protocol at fault but the aberrant response of the patient.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Of course!

[Hidden in reply to PMRpro]

The big question is why are they so misguided and why this never changes, they’ve stopped using leeches after all!

[PMRpro Ambassador in reply to Hidden]

No they haven't! Leeches are being used in modern medicine - very effectively.

But what medics learn at a certain stage of their education sticks and it is very difficult to dissuade them otherwise. There hasn't been massive research in the past because of this perception it is a simple disease that only happens to little old ladies and goes away after a few years. It isn't - and it is now becoming an economic feature, both in terms of disability and long term effects of the only available management.

[Hidden in reply to PMRpro]

But they do at least agree that the world is not flat or am I being optimistic 😆

[PMRpro Ambassador in reply to Hidden]

Possibly Hope springs eternal Optimism never hurt!

[seamaid]

I started my nurse training in 1959 and one of the things I learnt was how to apply leeches etc, I am sure I am still physiologically traumatised . but managed to stick it out 😱