Tapering prednisolone and PMR flare ups

[BlindTechie]

Hello, this is probably a very frequently asked question, sorry.

I was diagnosed with both PMR and GCA in March 2022 and immediately put on 60mg prednisolone which fixed my symptoms in a few days. Since then I've been tapering successfully until I lowered the dose from 4mg to 3mg. I was feeling fine at the end of 7 weeks on 4mg but PMR symptoms returned when I dropped to 3mg and persisted for a month. I was advise to return to 4mg and try again more slowly once PMR symptoms had gone. The PMR symptoms are still with me after 1 week at 4mg and I'm tempted to return to 5mg or higher to try to lose the PMR symptoms and then try a different tapering regime, e.g. alternating 5/4, then 4, then 4/3, etc.

When I managed to reach NHS advice I was told that persisting for several weeks and hoping the symptoms would go away was unwise since the more serious GCA symptoms could return; this is why I've only waited a week this time.

Any advice gratefully accepted.

[DorsetLady PMRGCAuk volunteer]

hi

Would suggest you follow the advice in this link describing how to deal with a flare - adding 5mg to last okay- so 4mg -

healthunlocked.com/pmrgcauk...

Drop back down to 4mg - and then reduce by only 0.5mg a time rather than 1mg -

And using on the tapering plans below - whichever takes your fancy -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

You have got low in a short time, so maybe now you should slow up a bit…and yes you do still need to consider your GCA - you certainly don’t want to shake that dragon’s tail….

[BlindTechie in reply to DorsetLady]

Thanks. That's very helpful.

[PMRpro Ambassador]

You aren't heading relentlessly for zero - you will only get there when the underlying autoimmune disease process has burned out and gone into remission. You are looking for the lowest effective dose and it sounds as if that is 4mg, possibly 3,5mg. Overshoot that and the little bit of left-over inflammation will build up until it is enough for you to notice.

It doesn't matter now slowly you taper, you may not manage to get lower yet if that is your lowest effective dose for now. You WILL get lower, just not yet.

[PMRnewbie2017]

The textbooks will say that PMR lasts 2 years and that's what many Rheumies and GP's are taught. Nobody says much about how long it takes to successfully taper to zero Pred and avoid flares along the way. You can only taper to zero once your body has stopped producing the inflammatory chemical which gives us the set of symptoms we call PMR, PLUS you can only taper to zero once your body consistently makes enough cortisol to drive all the other systems involved in good health. To put it into perspective it has taken me two years to consistently sit at below 2mg and I'm hoping that in 2weeks I will be at 1.5mg every day and I took my first dose of Pred in November 2017! You cannot rush any part of this and it is very frustrating and at times hard because flare symptoms are very similar to Pred withdrawal symptoms. I've made errors in judgement along the way but hindsight is a wonderful gift. You have references to lots of reading matter which will help and I would encourage you to slow down and caution you about exceeding the 10% reduction rule. Many of us (including myself) can only manage 5% reductions below 3mg.