Managing my Return from the Flare

[Lickle]

Hi All,

Grateful for the help from y'all on here regarding my recent flare and for pointing the way to the protocol for managing it.

I was on 7mg Pred when the flare happened. I added 5mg and went back to the 8mg as the level before for 2 weeks. I have now reduced back to 8mg and am asking for your advice again.

I've been back down to 8mg now for 5 days and notice a few symptoms of PMR early in the morning that ease off during the day once the first dose of 5mg kicks in. I tend to take the morning 5mg at about 8am and the 3mg at 9pm.

My question is should I stay at this level and hope that my stiffness, mostly in my hands, fingers and just a slight feeling in my shoulders gradually go. These were the same areas but far harsher when the flare happened, along with odd twinges in toes and old injuries like the knees. Or by staying on this 8mg will the stiffness get worse? Or do I up the dose slightly by 1 or 2 mg until all feeling disappears before starting to taper again?

It seems that there is a lot of trial and error in managing this horrible condition. I have not done any gym work while managing this last flare believing that may have caused it.

All comments are welcome as always.

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to add 1mg -and to the 9pm dose -that may be sufficient to get you through the early morning.

Obviously if that doesn’t work then you may need to go through the flare protocol again - but hopefully not.,

Once stable at 9mg -stay there a month -and then maybe reduce by only 0,5 mg a time and with a slower tapering regime

Couple here -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Lickle in reply to DorsetLady]

Thanks DL, I'll see how today goes then follow your suggestions. Then I'll follow your very slow taper protocol.

[DorsetLady PMRGCAuk volunteer in reply to Lickle]

Good …😊

[PMRpro Ambassador]

I think I would do as DL suggests - morning symptoms are likely to persist as that is when the inflammatory cytokines are shed for the day. If they really do remain just as they are, fair enough, The effect of the pred is obviously wearing off by early morning before the next dose is due so maybe the 9pm dose isn't quite enough. Even 1/2mg may be enough. It is a case of trial and error really to get the balance right.

It comes down to whether you are otherwise stable and how significant you feel a lower dose of pred is for you.

[Lickle in reply to PMRpro]

Thanks for the usual wisdom. I wondered whether to switch the 5mg dose to the 9pm and the 3mg to the morning. I tried that for a couple of days but it was still the same, so switched back. I'll follow DL's advice as you suggested and when settled gradually do the DL very slow taper.

[PMRpro Ambassador in reply to Lickle]

It may be you have reached your interim destination so beware with forcing a further reduction.

[Lickle in reply to PMRpro]

Yes, I understand from reading others posts about the interim.