Reducing when hit again: Although I am tiptoeing... - PMRGCAuk

PMRGCAuk

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Reducing when hit again

papadapadoo profile image
5 Replies

Although I am tiptoeing safely (so far) down to 4 1/2mg now, a friend has had a flare after two years of remission. They are starting him at 20mg. Will he be able to taper more quickly than he did last time? Is there any difference when PMR recurs after remission?

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papadapadoo profile image
papadapadoo
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5 Replies
Loughborough profile image
Loughborough

I have had pmr for many years now. Got down to 2mg of prednisolone and 10mg of leflunomide. At the moment I have no symptoms and rheumatologist says it is dormant. However Everytime I renew my script for prednisolone it is suggested that I reduce. I have tried but after a couple of weeks I start getting symptoms. My rheumatologist thinks this small dose is harmless long term and it's still doing its job. He says if I come off it and have a big flare up I would have to really up my dose and wean off gradually. So better to keep the status quo.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

They are starting him at 20mg. Will he be able to taper more quickly than he did last time? Is there any difference when PMR recurs after remission?

All of those questions fall into the category of 'how long is a piece of string?'

Only his PMR will allow him to reduce at it's pace.. some do say their PMR is different second or even third time around. What dose did he start on last time? That may well make a difference as well.

As we know nothing of his circumstances [and also we are very good, we don't have a crystal ball😊] , I think all you can pass on to him is - 'wait and see!'

papadapadoo profile image
papadapadoo in reply toDorsetLady

Yes, we're all different. I do know, however, that others have fallen prey to this recidivism and wondered what their various experiences were. Much as I hate having this curse myself, I am fascinated that it defies categorization.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topapadapadoo

Well hopefully you will get replies from those that are/have been in same situation as your friend.

PMRpro profile image
PMRproAmbassador

It depends - everyone I know who has had PMR more than once after a couple of years free from symptoms has said the episodes were totally different - but not consistent in the first being worse than a later one. And different in every way - not even necessarily the same symptoms or duration or response to pred.

PMR really is a law to itself - I have had PMR symptoms for some 20 years. I have never managed to get off pred before a flare turned up. And even with that pattern, each of the flare-ups has been different, some have been after being stable at the same dose for months, some have been due to reducing too far. The symptoms appearing haven't always been the same as in previous episodes.

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