Flare or Adrenals waking up

[Amerloque]

I was diagnosed with PMR October 2022 and I am currently down to 4mg Prednisolone ( down from 4.5 on 3/11). Since Monday I have been waking up around 4mg with pain in my hips. Not excruciating but definitely enough to keep me awake for a while, now getting pain in shoulders as well. This goes after I take my prednisolone at 7am. I am wondering whether this is the beginning of a flare and should go back up to 5 for a while, or whether it’s the adrenals waking up (or not). Is it best to get a blood test first before going up but that might mean waiting a week or so. Or should I just go back up to 5 wait a moth and try again?

Thanks for any advice

[DorsetLady PMRGCAuk volunteer]

Hi

As you have got to 4mg in just over a years would say you have dropped too low. You might resolve issue if you go back to previous dose... but this link does explain how to deal with a flare -

healthunlocked.com/pmrgcauk...

But you do need to slow up - you are not reducing come what may to zero - you are reducing slowly to find the lowest level that give you same relief as the initial dose...and it sound as if you have gone below that.

.. and PMR has a habit of lasting a lot longer than you, or your GP may think.

[Amerloque in reply to DorsetLady]

Thanks for the advice - not sure what ‘my’ Gp would say as our surgery is woefully understaffed and I seem to get a different one each time 😉

[DorsetLady PMRGCAuk volunteer in reply to Amerloque]

If they have any sense -hopefully they will say "get it back under control" . ..and to that end, the sooner you act, the better... and if you wait for blood tests - it will probably have deteriorated in the time elapsed

Try 5mg initially - as I said it might work...however, it might not - why I've suggested an option. 😏

[astromensch in reply to DorsetLady]

Thank you for the above link. I've been asking my Rheumatologist the same question for a year and a half. His definition for a flare is pain in the shoulders, neck and girdle lasting longer than 3-4 days. If it's a flare then increase the dosage by 1 mg. His mantra is get off pred as fast as you can, to the point where I equate prednisone to the devil. I have lost count of the scientific papers I've read looking the the answer to the same question- flare or tapering too fast. I'm certainly looking for a new approach, since, it seems, I've had more miserable days than good since I've gone below 5 mg

Since I'm new to this forum, I don't know your background. But, with respect, how and where did you gather all of this information?

[DorsetLady PMRGCAuk volunteer in reply to astromensch]

Some of it from my personal experience [had GCA] - and also others' experiences - have been on here for over 10 years - and you learn a lot over that time...😏..

As you are relatively new maybe have a look at this -

healthunlocked.com/pmrgcauk...

- and also at my profile -

healthunlocked.com/user/Dor...

[Amerloque]

thanks I’ll do that

[PMRpro Ambassador]

Since you mention it is worsening - that is the cardinal sign of a flare starting to build. How long are you staying at each dose now? Did you drop from 4,5 to 4mg overnight at the start of Novemeber or was 3/11 where you started a taper step? We often say "the lower the slower" - staying at a dose for a couple of months now makes sense. Whatever - 4mg is not enough, 4.5 may have been but a return to 5mg makes sense.

[Amerloque in reply to PMRpro]

Thanks I have been going down 0.5mg every 3 - 4 weeks so yes I did go from 4.5 - 4 overnight. I guess I need to slow down some more.

[PMRpro Ambassador in reply to Amerloque]

Definitely and also think of using one of our slowed tapers which you will find under Tapering in the FAQs. You must be getting close to the dose you are looking for - lowest effective dose, not zero just yet.

[annieg1890]

Hi, I was diagnosed at 51 years old and started on 20mg 7 years on I am at 2.5mg of pred a day and that's the lowest I have managed to go to date. I was taking leflunomide for about a year and managed to get down to 1.5 a day, but that's not a great drug to be on long term so came off that. Take your time in tapering as other replies have said. And good luck with it