Was getting complacent

[Stroppymoo]

Last Monday did steam cleaning of my bathroom, involving much reaching upwards. Next morning reduced to 7 from 8 pred. Evening pain under both armpits, so back to 8 on Wednesday. Thursday forgot to take any pills whatsoever! Woke up at 3am by pain, went to get paracetamol and realised that I'd missed my pared dose. This has led me to the unhappy conclusion that the pmr hasn't burnt itself out and must stay on 8mg. Been off work with a broken finger for 7 weeks and been rather inactive. Am dreading going back now 😟

[SheffieldJane]

Gosh poor you and your deeply clean bathroom. I was under the impression that with the dead slow reduction plan you could sort of sneak it past PMR. Are we collectively waiting for spontaneous remission to coincide with coming off Pred.? That seems to be a really big ask. Or a dose we can live with?

[PMRpro Ambassador in reply to SheffieldJane]

SJ - The slow reduction will only ever get you to the lowest dose that manages your symptoms - if it doesn't say that in the text I must go back and write it in large letters! It avoids the steroid reduction problems of pains and stiffness that is so similar to PMR that you go back to the previous dose thinking it is a flare.

However slowly you go, you cannot get past that lowest dose - unless your lowest dose is zero.

[SheffieldJane in reply to PMRpro]

It probably does PMRpro can I plead brain fog this morning please?

[markbenjamin57 in reply to PMRpro]

Well put, PMRpro.

As for putting it in large letters, maybe 5 metre high illuminated placards would be better?! There seems to be perpetual confusion over this issue - both with GPs and patients.

Keep up the good work

MB

[PMRpro Ambassador in reply to markbenjamin57]

With dayglo as well do you think?

To me it is blindingly obvious - but some doctors must be blind already...

[chris2ubelle in reply to PMRpro]

This is so helpful! Thanks for sharing this knowledge.

[Rose54]

Hi

I too cleaned my bathroom but only did a wall a day too much to tackle

in one day .Don't forget arm muscles will be weak so do expect them to ache if you do too much .

Like you two weeks ago went 48 hours without taking preds and was reducing from 10.5 to 10 .

As for burning itself out we wont know that until we gat down to zero

So take it easy and don't rush it .

Having the time of may have been the best thing for you

Rose

[PMRpro Ambassador]

As Rose so rightly says: you CANNOT know that PMR has burnt out until you get to zero pred. No ifs or buts - the test is: do you get no symptoms without pred?

But DON'T do some fairly heavy physical job that involves your arms AND reduce at the same time.! That is asking for trouble really!

Now you are into single figures it may be time to use the dead slow reduction approach that Sheffield Jane mentions. At this stage 1mg at a time is a lot and now above the 10% rule anyway. Or you could try just 1/2mg at a time. Alternating old and new dose for a week or two also might be enough without going the whole hog of the dead slow approach,