Was getting complacent : Last Monday did steam... - PMRGCAuk

PMRGCAuk

21,030 members39,706 posts

Was getting complacent

Stroppymoo profile image
8 Replies

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 😟

Written by
Stroppymoo profile image
Stroppymoo
To view profiles and participate in discussions please or .
Read more about...
8 Replies
SheffieldJane profile image
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 profile image
PMRproAmbassador 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 profile image
SheffieldJane in reply to PMRpro

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

markbenjamin57 profile image
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 profile image
PMRproAmbassador 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 profile image
chris2ubelle in reply to PMRpro

This is so helpful! Thanks for sharing this knowledge.

Rose54 profile image
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 profile image
PMRproAmbassador

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,

Not what you're looking for?

You may also like...

Recurring pain

Hi, I’m looking for some advice. I was diagnosed with PMR in approximately 2009, after trying to...

No wonder I was in pain!

Some of you will recall that when I returned from Minorca on 4th July I had a burnt foot, despite...

Tapering question

I was able to taper from 12.5 mg of prednisone in January to 7 mg about 2 weeks ago. While on 7.5...

Getting over IT!

Dx with PMG in January, 2017, on top of an existing dx of Parkinson's Disease. It's like a double...

I was almost there

Hi everyone not been on here for a long time as I have been doing really well until now,I have had...