Tapering

[Insty]

Hi. I was diagnosed with PMR in 2015 and was told it would burn out in 5 years. Well it hasn’t. I started on 30mg of Pred and am now on 4.5. But the pain is still bad in toes, heel, stiff painful fingers, shoulder and neck. Should I up my dosage? The rheumatologist says taper at 1/2 mg every 2 months. Is that correct? I got to 2.5 but couldn’t live with the pain so went back to 5mg. Any suggestions?

[DorsetLady PMRGCAuk volunteer]

Rheumy's advice is generally good...but what should have been added was - don’t continue to reduce if you have any return of symptoms.

Usual advice is to add 5mg to the dose you last felt good at....stay at the increased dose for 7-10 days to clear out the built up inflammation. Once that’s done you can go back down to just above the dose that caused issues.

If it were me it’s go up to 10mg, get back on track (hopefully) then drop back down to 5mg - stay at least a month to make sure all okay before reducing again.

Might also help to use a slower tapering plan - this is just an example(s) - healthunlocked.com/pmrgcauk...

5.9 years is nearer average for PMR - but to be honest it does it’s own thing...you can only manage it until it decides to go into remission.

[Insty in reply to DorsetLady]

Thanks for that. What does tge stand for?

[DorsetLady PMRGCAuk volunteer in reply to Insty]

Should have been ‘the increased’......sticky fingers! 😳will edit!

[PMRpro Ambassador]

At least you have a more realistic rheumy than many! Many would suggest 2 years! His rate of tapering is fine as well - but you are not reducing relentlessly to zero come what may. You are looking for the lowest dose that manages the inflammation and symptoms as well as the starting dose did. Not the same thing at all.

So when did pain start to increase after a reduction step?

[Insty in reply to PMRpro]

The pains got worse around 5mg. Is it better to take Pred in the morning or is it ok to split the dosage half morning and half after tea?

[PMRpro Ambassador in reply to Insty]

Then you need to be back at 6mg, hopefully that is enough to get the inflammation and pain under control, and then you can try slower and more careful reductions in the dose, always listening carefully to your body.

Whether it is better to take pred all at once, which is the standard, or split it depends on you and YOUR personal PMR and response to pred. The antiinflammatory effect of pred lasts between 12 and 36 hours. If you are towards the 12 hour end then the symptoms will start to reappear before the next dose of pred is due. Then it may help to split the dose, often 2/3 in the morning and 1/3 later enough in the day to carry the effect over to the morning. So you have to look at what happens when you take the dose 1x daily - does that work for YOU? If not, what is happening? Is it because it is now not enough - or because it doesn't last?

[Insty in reply to PMRpro]

Thanks for that. Will go to 1 dose am and see if it lasts.

[Purplecrow]

Hi, originally, my Rheumy said I'd be on pred for a year..... in 2013.

Currently I'm on 6 mg pred, and contemplating a drop to 5.5 mg.

PMR doesn't follow anyone's timeline. You will recover in due course, and trying to rush will lead to you-yo pred doses...not good.

Better to settle in, accept the disorder as any other, medicate as needed, and know you will eventually be Well.

Kind regards, Jerri

PMR diagnosed 2013

[Insty in reply to Purplecrow]

Thanks for your advice. I have tried to follow a calendar taper but that hasn't worked. Does everyone recover in the end?

[Purplecrow]

I leave that answer to the ones who walk the path ahead of me...my common sense tells me eventually the illness will burn itself out. When,?! No answer.

Advise you Mindfulness. Today is all we have.

Kind regards, Jerri

PMR diagnosed 2013