return of symptoms when tapering

[Gotryit]

Hello - diagnosed with PMR June 2024 - 15mg starter which took about 2 weeks to take effect Consultant has requested I now taper to 12.5 for 4 weeks I’m on week 3 of 4 weeks before I reduce again to 10mg - I have been overdoing active tasks the last few days and this morning have woken up with mild version of original symptoms I would appreciate any advice on how to manage this - should I take a pain control medication paracetamol or immediately increase prednisone

Thanks

[DorsetLady PMRGCAuk volunteer]

Tapering 15-12.5-10mg may be in the guidelines, but it’s not achievable for everyone.

Would say that 3 weeks into new dose, your body is telling you it’s too big a reduction. Maybe purely that, but probably too much activity as well.

You might find painkillers help, so try them first, maybe today and tomorrow…if they do, great. But I’m thinking you probably need to return to 15mg - get back on track, and then reduce by 1mg a time… if you don’t have 1mg tablets, you can cut cut 2.5mg in half for now until you request 1mg… which you will need in future anyway.

Even if things settle with the painkillers, I’d opt for smaller reductions down to 10mg whatever.

[Gotryit in reply to DorsetLady]

Thank you Dorsey lady you are such a good help - can I ask would you suggest if I take back up to 15mg should I reduce after a couple weeks by 1mg weekly or monthly or something different

[DorsetLady PMRGCAuk volunteer in reply to Gotryit]

Yes back to 15mg… and some of us who have been on here a long time think that monthly reductions is the best way. As you have discovered it can take at least 2 weeks, sometimes 3 to really know current dose is sufficient… but the view nowadays from the medics seems to be get down asap. That may work for some, but certainly not all.

If it works, great, but when it doesn’t it just means longer on Pred, more Pred overall and patients feeling they are doing something wrong… which is counterproductive in my mind.

And you do need to remember, Pred is only working on the inflammation side of your illness, not the underlying illness itself - so be kind to yourself. You wouldn’t dream of trying to run a marathon with a broken leg would you? 😊

[PMRpro Ambassador]

To some extent it depends how much you have been overdoing things! If you hadn't been overdoing activities I'd agree immediately with DL - as it is, the view is rather clouded! You need to accept that part of managing PMR is what you contribute and until you know how you get on with "your" PMR and response to pred, you have to moderate activities.

If it were me I'd try a day or two of rest and paracetamol first and then if that doesn't help, start again as DL has suggested. It used to be that you stayed on the sstarting dose longer which seems to give a bit more cushion for reducing the dose but now they are all so scared of pred they tend to rush patients off and end up causing flares and using more pred than if they had approached the task more slowly.

[Gotryit in reply to PMRpro]

Thanks you Dorsey lady

You are right I’m definitely learning as I go along - I know now through experience not to get carried away and do too much from now on slow and steady

Thanks again

[Gotryit in reply to PMRpro]

oh so sorry PMRpro Ambassador - I obviously didn’t look at your user name

Thank you for you advice I will certainly use going forward

[PMRpro Ambassador in reply to Gotryit]

No problem - I'm just PMRpro - the ambassador bit is a HU tag, no idea what it means!!!!

[piglette]

If you are starting to have aches and pains coming back DON’T reduce. You will only make things worse. My rheumi insisted I should drop 2.5mg when I was in real pain already. I dumped the rheumi!

[Charlie1boy]

My experience absolutely endorses the advice you’ve already been given.

From 15mg, which I stayed at for 35 days, I went to 13 for 25 days, then 11.5 for 29days, then to 10mg. My golden rule was not to reduce if I was aware of any of the pmr symptoms, and I gradually learned the hard way not to overdo things.

When I hit problems, I occasionally went up by 1mg, or even a half mg. It never concerned me how long I stayed at one dose, but, fortunately, I was never hassled by my GP to reduce.

PATIENCE is the name of the game with pmr.

Good luck, and do keep in touch with this excellent Forum.

[Gotryit in reply to Charlie1boy]

Thank you for your advice - this forum is a godsend to me