Trying to get below 1mg with new symptoms?

[Bloomsbury123]

Hi all - I really thought I was nearly rid of PMR. I was down to 1mg and doing really well (2+ years since diagnosis and 15mg pred) have been very slowly alternating between 0.5mg for around a month. Yesterday I just felt I had PMR in my body, hard to describe but I’m sure you know what I mean. I have inflamed tendons or ligaments in my right hand and this morning in my feet, on the soles and Achilles’ tendons on both feet, sore even to touch. Pain in both hamstrings and shoulders. I took 1mg and foot pain gone, hamstrings pain almost gone. Just stiff hands and shoulders.

Do I just stay on 1mg forever?

[DorsetLady PMRGCAuk volunteer]

No, not necessarily - but to be off completely within 2-3 years you certainly would be one of the lucky ones. Many take much longer.

Stick with 1mg for the next few weeks, provided you feel okay. If symptoms increase then increase the Pred accordingly.

TBH if you live in the northern hemisphere with winter upon us, I wouldn’t be in any hurry to decrease anyway. You will get to zero one day, but not until your PMR has gone into remission, and from what you describe it hasn’t as yet. So no point in rushing!

[Bloomsbury123 in reply to DorsetLady]

Thank you, I must admit I panicked this morning to find I had sore feet, that’s a new one😬 I’ll stick with 1mg and hope I haven’t ‘poked the bear’ 🤞🏻

[PMRpro Ambassador]

I would!!! But then - it is a distant dream for me. 1mg is so little it isn't going to cause any problems.

Prof Dasgupta told us a few months ago that he often keeps patients at 2-3mg indefinitely as it reduces the risk of relapses. It really isn't unusual for patients to find that 1mg is enough - less is not.

[Bloomsbury123 in reply to PMRpro]

Thank you. I guess you have to try until you find what works but I was so hopeful it was on its way out. Grateful to be where I am though as I know many are not as fortunate.

[PMRpro Ambassador in reply to Bloomsbury123]

I think you can look at it as being on the way out - just it has got stuck in the revolving door and isn;t gone yet! It's fine as long as it doesn't get chucked back in the wrong way!!

[123mossie]

Not sure this’ll help but I’ve just realised I can cut a 1mgm into 4 so 0.25 which if alternated is a very low tapering dose. I’m about to start going from 5to 4 so will use this tiny dose. Good luck

[Bloomsbury123]

Thanks - that might be the way forward next time I try (will be third attempt). Fiddly little pills though, I use a pill cutter and often get one half bigger than the other with some crumbs.

[bromley621 in reply to Bloomsbury123]

Some brands of 1mg Pred tablets (eg Wockhardt) are flat with a score line on one side. They are much easier to cut in half than other brands with rounded tablets. Check them out on the Electronic Medical Compendium. Also 2.5mg tablets (non-gastro) are available from some chemists (usually the privately owned ones, not the big chains) -- and cut in half =1.25mg.

[Bloomsbury123 in reply to bromley621]

That’s a good idea, I have some 2.5mgs left over which my GP grudgingly prescribed! Thank you x