Advice please

[Rosbud]

Am 6 weeks in and still on 15pred daily , GP appointment on weds and I know he wants to reduce but not by how much , my problem in still very stiff in the morning but after pills and waiting an hour or so it eases off , still foggy brained and have slight blurring in my right eye , also has anyone heard of R2S3PE syndrome ?

[DorsetLady PMRGCAuk volunteer]

Hi Rosebud,

Can't help with R2S3PE syndrome, but your foggy brain and slight blurring in eye are probably down to the Pred - side effects.

Rheumy will probably try to reduce you by 2.5mg to 12.5mg - it's a recognised reduction, but some patients find it too much. Plus it's slightly higher than the well known recommendation of not more than a 10% reduction of your existing dose.

Whoever signs your prescriptions ask them for 1mg tablets so you can make smaller reductions - you'll need them soon anyway, so might just as well get them now.

No matter what he says, don't reduce if you don't feel well enough. You have probably only just got the initial built-up inflammation under control, so don't rush things. You still have the underlying PMR, and the substances (cytokines) that cause the inflammation are produced every morning, so you need to keep them under control as well, and it takes a little while for you to find the correct level of Pred to do that. Reduce too quickly, and there's a possibility that you'll go below the level you actually need.

Good luck next week.

[Rosbud in reply to DorsetLady]

Thank you will always dr for some img when I speak to him , I have A really good GP and in sure he'll do all he can to help me x

[PMRpro Ambassador]

R2S3PE (is that correct? I can't find it in google to give you a link although I know what you mean but am not entirely sure of the right name) syndrome can be separate but is often found alongside PMR.

It is "normal" to be stiff in the morning before the pred takes effect. The inflammatory substances are released in the body about 4.30am. The longer you wait before taking the pred the more inflammation will be caused. Many people wake early and take their pred then settle down for a couple of hours to let it work. Others split the dose, taking perhaps 2/3 in the morning and the rest later - what time varies and a bit of experimentation to find the best time is common. You want to be late enough so it works in the early morning but early enough so it doesn't affect your sleep.

[Rosbud in reply to PMRpro]

Thank you ,was given the syndrome number and told it's A rare form of pmr , not that I have it but A friend does , your advice is invaluable to me as A mere beginner on this journey x

[Ladybird25]

I've come across this before. It's RS3PE. Remitting seronegative symmetrical synovitis with pitting edema (oedema in the UK).

[PMRpro Ambassador in reply to Ladybird25]

Yes - found it this morning while reading up about something else! It is described as part of the differential diagnosis of PMR in UpToDate - but I have read papers where the authors include as part of the PMR syndrome.

I suspected there was one digit too many...

[Ladybird25 in reply to PMRpro]

I think that's where I encountered it too. I wrote it down on a scrap of paper for future reference... an extra 2 sneaked in!