Hi

[Jooster]

Hi everyone, I'm new to this group and glad to find you! I was diagnosed with PMR last year and the relief to be on 20mg Pred was great. I managed to reduce to 5mg over the months, but then BOOM! Major flare up and back to square one. Now I seem to be yo-yoing between 20/17.5mg, and having to take paracetamol as well some mornings. I am lucky the pain in my knees and shoulders has subsided, but my feet are peculiar! I have an altered sensation with tingling in my feet and toes, and what feels like a tight band from my inside ankles round to the ball of my foot. Does anyone else have this?

[SheffieldJane]

The soles of my feet burn in bed some nights. I think this is related to peripheral neuropathy, although I do have Psoriasis, confined to my feet, thankfully. The specific symptom of a tight band extending from your ankle to the ball of your feet would interest a physiotherapist. It maybe related to the muscle weakening that we can experience with Prednisalone use.As you have probably understood, your initial taper was far too fast and you are now facing the consequences. Future tapers need to be pretty slow and never drop by more than 10% of your dose at a time. The dead slow nearly stop method described in the pinned posts can get you out of this hole.

[PMRpro Ambassador]

I wonder if you did need to go all the way back to the beginning? Did they try a lower dose first? But my immediat thought is - stop yoyo-ing. Getting into that sort of pattern with dose is a bad thing and every time you have to go back up at can be more difficult to get lower the next time. I would say say go back to 20mg until your symptoms are settled - and blood markers low if they work for you. Then start to reduce by at most 1mg at a time and using one of the slowed tapers we talk about a lot. This is one:

healthunlocked.com/pmrgcauk...

There are others - you'll find links in a Pinned Post, links are at the side of my page, not sure where on other devices.

You are adjusting your activities to avoid making the pain worse? Pred isn't a licence to go back to your previous normal, you have a new normal now and it is one you must adjust to.

However, it doesn't sound like a flare caused by overshooting the dose you needed, it sounds more like a real exacerbation of the underlying disease process which does happen in some people. Does the paracetamol really help the PMR symptoms? That is often not the case and may indicate there is something else going on besides the PMR we talk about.

The pain under your foot could be plantar fasciitis - has that been suggested?

[DorsetLady PMRGCAuk volunteer]

Hi, Bit more general Info on PMR etc - healthunlocked.com/pmrgcauk...

[PMRnewbie2017]

Welcome. Can I just add that from experience every flare makes it harder to find the new golden dose. Learn from your experience and if I were you I would go back to the dose where you were truly pain free (15 to 20mg range probably) as PMRPro has suggested. There are no quick fixes with PMR so perhaps some mental readjustment may be necessary? Data shows the average duration of the illness is 5.9 years and not the 2 years commonly spoken of by doctors. Come back to us as often as you need to.

[Jooster]

Thank you everyone, I think I need reassurance at the moment as this is all new to me. I think it is right to try to accept this is the new normal for a while, just like the pandemic! I also need my partner to understand that this is not just the affects of me getting older!