PMR the Chimera (as in Greek Mythology)

[whitefishbay]

Hi Everyone

I have had PMR since Oct 2015 and started taking Pred in March 2016. Instant (4 hours) relief. I could walk faster than my family (I am always last). Anyway reading everyone's 'journey' I have had a pretty smooth sail and I still work full time. Down to 1 mg and my only problem are my aching feet - the tops of my feet. Rheumy says extensor tendonitis and the podiatrist says no. Anyway stuck with them. If I don't walk they are super stiff and if I walk too much they are super painful and stiff. All I know is you gotto keep moving as you age.

Anyway lately I have felt aching and sore. I wake at night because my bones hurt. Hips tender when turning over. My right leg aches and wakes me esp the knee and the right side of the shin area. How weird right. Went to my GP and we both decided that I should take 5 mg (have been on 1 mg since last summer). I find out the blood test results next week but in the meanwhile I do feel better. Less drag and more oomph.

So what is this? a flare? old age? PMR is a devil isn't it.

Thank you for your thoughts.

whitefish

[DorsetLady PMRGCAuk volunteer]

Hi,

It is recognised (at last) that PMR can last a lot longer than the 2 years that used to be quoted - median is quoted at 5.9 years - so you probably still have it lurking. Whilst you have been okay at 1mg for about a year (although your foot problems could be PMR) something has obviously tweaked “the dragon” - and it’s possibly resurfaced!

If your pains weren’t so widespread, then I’d plump for something else, maybe arthritis, but it does sound suspicious like PMR.

Hopefully your reaction to the 5mg dose will confirm or deny that.

[whitefishbay in reply to DorsetLady]

Thank You. I do feel better on five mgs. but how long do I stay on 5 before reducing? It’s a game of give and take. 🎼🎼🎼

[DorsetLady PMRGCAuk volunteer in reply to whitefishbay]

Well - at least a week - or until you feel much better and/or bloods are back.

Then you may be able to drop back down to, say 2.5mg quite easily - and then taper 0.5mg in a timely manner.

To be honest - 0.5mg sounds nothing and I’m sure some doctors think that - but it can mean all the difference between being in pain and being pain free.

[whitefishbay in reply to DorsetLady]

Absolutely. Thanks for your expertise. Enjoy the day. 🌞🌞🌞

[DorsetLady PMRGCAuk volunteer in reply to whitefishbay]

I am sitting in the garden reading the papers. Been out for my walk along the beach wall ( not as dangerous as it sounds - it’s at least three pavements width wide!) this morning followed by coffee and brunch!

Life can’t be bad! Might be a bit less frenetic when holiday makers go home!

[whitefishbay in reply to DorsetLady]

Civilised!

[PMRpro Ambassador]

If it IS a flare then you may not be able to drop back to the old dose - flares can be due to increased disease activity too and that is more likely if you had been reasonably well on 1mg for some time.

[whitefishbay in reply to PMRpro]

PMR what a minx. Every time I tried to cut down I felt worse. Thanks for your expertise. How are you?

[PMRpro Ambassador in reply to whitefishbay]

Pretty good - travelling at the moment and suffering due to too many stairs!!!!!

[whitefishbay in reply to PMRpro]

Ugh. So 'travel is as good as a rest' but without stairs. Umbria is all stairs. Knee killer.

[PMRpro Ambassador in reply to whitefishbay]

Absolutely!!!!! But this is visiting family and the grand tour of the UK ...

[whitefishbay in reply to PMRpro]

Oh no. It is absolutely boiling 29 in London anyway.

[PMRpro Ambassador in reply to whitefishbay]

Less boiling in Edinburgh but lovely. Don't worry - we head south tomorrow, the weather will change for the cooler/wetter/nastier ...

[Constance13 in reply to PMRpro]

Deciding to be a re-pat??

[Constance13 in reply to PMRpro]

Stairs! We live on the first floor and the stairs are wide and not steep. Excellent for exercise! But, I come in the entrance face the lift and it never occurs to me to climb the stairs.😂

[PMRpro Ambassador in reply to Constance13]

I find Scottish stairs easier - English ones tend to have deeper steps and are steeper too. I suse the stairs at home but only when I go out/come home. Here it is for every loo stop ...

[Constance13 in reply to PMRpro]

Oh dear! Lovely in the middle of the night.🙃