Tapering after a flare

[Magictherabbit]

I posted at the beginning of April saying I had a flare up of my PMR

At the time I was on 5/4 mgs and I rang the rheumatology nurses as my rheumatologist was on holiday . They said only go up to 6 mgs which of course made no difference. I rang again after a few days and they said to increase to 10mgs which I know is your advice on this forum ( doubling the dose for a while)

I was on 10 mgs for a week and then they said drop to 8 mgs which I’ve been on for nearly 2 weeks .

I’m fairly stiff in my arms and legs in the morning but feel better come the afternoon.

I’m now not sure where to go from here…they want me to drop to 6 mgs in a few days but I feel that may be too low .

Would love some advice from this very helpful forum .. thanks

[DorsetLady PMRGCAuk volunteer]

The usual advice for a flare is contained in this link- and it’s not to double the dose per se, it’s to add 5mg to dose you last felt okay.

healthunlocked.com/pmrgcauk...

I would say you were not on correct extra dose for long enough, I usually say 7-10 days, but you can stay up to 14 days without impacting your drop back down. Whether that would have worked, it’s difficult to say, and what happened in the past is just that.

I’d be inclined to stay where you are for another week, and hope things get better… but unfortunately there’s no guarantee..

[PMRpro Ambassador]

It doesn't sound to me as if you are ready to drop back that far - how quickly had you tapered to 5mg before? Is it possible you had overshot a lot before the flare?

[Magictherabbit in reply to PMRpro]

It has taken about 4 years to get to 5 mgs …having got just below that but having to increase again and obviously not by enough ….just been going on advice from my rheumatologist .

I’m going to stay on 8 mgs for another week and then reduce to 7.5 and see how I feel .

Thanks for advice

[PMRpro Ambassador in reply to Magictherabbit]

It took me over 4 years to get reliably below 10mg! And later much the same happened to me as you - I got to 5mg and was fine there for a while and then I tried to go lower,1mg at a time using a slow taper as my pred can't be cut. 4mg seemed OK but then symptoms reappeared and I had a massive flare that needed 15mg to suppress. You never know - and it can be the disease activity that ramps up rather than you overshooting the dose you need.

[Magictherabbit in reply to PMRpro]

Thanks for your advice and support…I don’t know anyone with this disease so this forum is a lifeline. I only see the rheumatologist once a year and he just so keen for me to be off pred …saying all his other patients manage to be off it . I have sometimes wondered about finding a different rheumatologist …..the GPs don’t seem to have much knowledge of PMR either .

[DorsetLady PMRGCAuk volunteer in reply to Magictherabbit]

His other patients “may be off it” - but they have their version of PMR- you have yours.. Full stop.. and if he cannot grasp that then that’s his problem, not yours.

If you only see him once a year you’d probably be better off with GP - even though they don’t have as much experience -they might be willing to learn and be more accepting.

[PMRpro Ambassador in reply to Magictherabbit]

I doubt it - many people take more than 4 years to get off pred, there is study evidence to support it but they are probably back under GP care and he doesn't know. The answer to that is "I am not your other patients, Patients are individuals." ...