PMR flare. How to proceed?

[agingfeminist]

After 4 and half years tapered from 50mg(for suspected GCA) to 0.5 mg. The a month ago went to zero.Past couple of weeks noticed some early morning stiffness in arms and legs...which eased as the day went on but I did have characteristic PMR waddle. Buried head in the sand.

This morning stiffness in neck and limbs...just how PMR started before I became immobilized by the disease and was then diagnosed.

I took 5mg pred an hour ago and the stiffness has gone! (Pred worked like magic when I first took it back in Nov 2019)

Thinking of two more days of 5mg, then dropping to 2mg for a couple of days, then 1mg and see what is happening. But need some advice please. (Obviously all plans depend on returning stiffness)

[DorsetLady PMRGCAuk volunteer]

Oh rats!

I’d give the 5mg a few more days - 5 at least, and the same for 2mg [assuming you have enough of a stash] and then re-evaluate at 1mg..

Hope it sorts things out for you.

[agingfeminist in reply to DorsetLady]

"Oh rats!" says it all. Thank you so much for the advice. I do keep a stash. I'll let you know how it pans out.

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

SnazzyD has attached my link from the FAQs -I didn’t bother because I thought you were probably aware of it anyway. 😊

[SnazzyD]

Hello, have a read of this from the Mrs Nail’s FAQ’s on managing a flare. Skip over the first bit about withdrawal, then you’ll see that you need to be on your extra 5mg for 7-14 days and then drop back to just above where the dose was insufficient and stay there 3-4 weeks. Have a read of this.

healthunlocked.com/pmrgcauk...

[agingfeminist in reply to SnazzyD]

Thanks Snazzy. What would I do without my HU friends?

[PMRpro Ambassador]

Hard luck - the PMR is almost asleep - but not quite. Just treat it as we always suggest for a flare which you are doing and having got back to 1mg take a very slow approach for that last bit - a couple of months at least at 1mg before starting a VERY slow wander in the direction of 1/2mg, over a few months. There have been people for who 1/2mg every 3 days did the job - but no pred was that step too far!

[agingfeminist]

Thanks. Yep..I have taken all the advice on board...slow slower and even slower. I was so hopeful that maybe zero pred would be the beginning of the end to the muscle myopathy...but I don't think the low doses that might keep the PMR under control is really responsible for the ongoing myopathy...it got triggered years ago at the high levels of pred...I guess it might be here to stay...BUT who knows. I appreciate your reply.

[piglette]

Sadly the PMR is still lurking and it is very good at turning round and biting you. I know it is frustrating when you think you have got to 0 and you haven’t, but just take it slowly and you will be down to zero again hopefully for good.

[agingfeminist]

Thank you Piglette. I do feel well and truly bitten. There is the slight perk of the deathly fatigue abating now I am on 5mg.