How to best deal with a flare

[Mervetheswerve]

I’m on my second tapering cycle and have been on 5mg pred/day for about six weeks now. I have pain in both shoulders and suspect this is what is known as a “flare”. My question is, is it better to hit it hard with a blast of say 10, 12 or even 15mg for a short period or just ease up the dose to, say, 7mg for longer- I.e. effectively unwind the taper? Thx

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare - but basically you to add 5mg to current dose -

In your case as you have been on 5mg for so long before flaring, that is telling you it’s just on the cusp of being enough/not being enough… so once back under control back to 5.5mg or 6mg, NOT 5mg for now or it may well happen again.

healthunlocked.com/pmrgcauk...

If not already, suggest only 0.5mg a time and slower tapering plan from now on… will help PMR and adrenals.

Variations here-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

"I’m on my second tapering cycle "

DL has said the rest I'd say so I won't repeat it - but what exactly do you mean by this? Have you done starting dose to zero once and the symptoms returned? So you went back to the start?

[Mervetheswerve in reply to PMRpro]

Yes, I started my first cycle on first diagnosis in July ‘22 and tapered at -1mg every four weeks down to zero in May ‘23. I was symptom free until early July when it came back with a vengeance after a long bike trip. I went back on 15mg in late July ‘23 and have been tapering much more slowly this time to the point that a year on I am down to 5mg. I’ve been on 5 for 8 weeks and am just experiencing this flare. Hence my question about dosage to get it back under control.

[PMRpro Ambassador in reply to Mervetheswerve]

Oh right - but the return last summer was not a relapse even then - it was much more likely that your body storing up the tiny amount of unmanaged inflammation PMR at a low level creates. Not very very low - then it can take up to 6 months to build up but probaly a couple of mg ideal dose level. It's that late stage that must be extra slow we find - taking months for the last couple of mg.

But it does vary in intensity at all levels, I think it would form a sine wave if you could measure and plot the intensity and on a downward phase you get lower but then it wakes up a bit again and you "flare". But the peaks are consistently lowering over time. Tricky customer!

[Mervetheswerve in reply to PMRpro]

So, if I go back to current dose +5mg per DL’s suggestion =10mg total, how long do I stay on 10 before starting to taper at 0.5mg? Four weeks?

[DorsetLady PMRGCAuk volunteer in reply to Mervetheswerve]

With the flare protocol you are only on increased dose for up to 14 - no longer. Then you drop back down to just above the dose that caused the issue. So 5.5mg or 6mg -m stay in that for 3-r weeks and then restart your normal taper - as explained in link I sent.

[Mervetheswerve in reply to DorsetLady]

That is great. Thanks. I’ve just had a similar conversation with my Dr. Will start again on 10 tomorrow. Am also going in for a CRP blood test tomorrow. Thanks again Dorset Lady and PRMpro! You do very good work! MtS

[Italybound62 in reply to PMRpro]

After 2.5 years w PMR and 3 unsuccessful tapers. What I am learning (mostly from this group) is that even if you very slowly, and carefully get down to zero, If PMR is not in remission you will still flare again no matter how slow you taper

Agreed? Do I understand correctly?

In other words

I used to naïvely think Prednisone somehow cured PMR and you just had to then carefully taper off. How wrong I was

[PMRpro Ambassador in reply to Italybound62]

Exactly - pred cures nothing, it is a management strategy to give a better quality of life until the underlying cause of the PMR burns out and goes into remission which it does for over 90% of patients eventually but it can take several years for some.