Came off Pred - feet and leg pain

[Purplelamp]

Finished Pred 2 weeks ago after my second bout of PMR in 5 years. I have been on it this time since Ju,y 2023 and reduced slowly. GP told me to reduce to 1mg and come off.

Since coming off my heels and the top of my feet are agony and legs are heavy and painful. Struggling to walk. A few weeks ago I could walk miles! Also the old shoulder pain and restriction is back.

CRP was 10 when I went on and is 9 now I’ve come off. I do have arthritis in my feet, shoulders, thumbs and neck but it hasn’t been at all painful until I came off. Base of my thumb has swollen up again as well.

Should I go back to the GP as I feel I’ve achieved nothing by being on steroids for a year?

[DorsetLady PMRGCAuk volunteer]

Should I go back to the GP as I feel I’ve achieved nothing by being on steroids for a year?

You should go back to GP -and be on the correct dose that controls your PMR.

If you could walk and had no issues a few weeks ago - then why not return to that dose.

If you got pain relief at some dose, not sure you can say you achieved nothing.

[Purplelamp in reply to DorsetLady]

I will phone on Monday. I had no pain on 1.5mg then at 1mg it started to creep back in. Then at zero for the last 2 weeks its back with a vengeance. For some reason he was eager for me to come off steroids and cancel my repeat prescription.

[DorsetLady PMRGCAuk volunteer in reply to Purplelamp]

You may find that going back on a low dose - around 2 or 3mg will be enough.

I really don’t get why some doctors are in such a rush to get you off Pred when you are on such low doses…that’s the time you need to go really slowly.

[Purplelamp in reply to DorsetLady]

Thank you will do xx

[PMRpro Ambassador]

Like others before you, you have discovered that 1mg is plenty to hold the inflammation of PMR but zero is a step too far. If only doctors could understand that too! You may be fine for a short time but then the dripping tap of inflammation builds up enough to produce symptoms again. You have actually been lucky to get to 1mg in a year - PMR rarely lasts such a short time and why your GP was in such a hurry at that dose beats me.

Since it is such a short time, if you are lucky you will get away with the flare protocol and dropping back to 2mg and then 1.5mg (i.e. 5mg for up to 2 weeks and then drop straight to 2mg), If you were already feeling it at 1mg, basic rule applies, DON'T taper when you have pain!! But I wouldn't advise going down to 1mg straight away,

Don't look at it as "I haven't achieved anything ...", The pred cures nothing - it is a management strategy and you will need a low dose ongoing until the underlying autoimmune disorder that creates the inflammation burns out. You have achieved a lot - you have established that your PMR at present needs a pretty low dose of pred to keep it quiet - that is a great start, and if all is well you will get back to 2mg and then you can work on tiny steps to get to zero - but it might take months, even years. I do hope your GP is cooperative!

Sorry it is so late - only just got back from holiday and have been travelling for the last week.

[Purplelamp in reply to PMRpro]

Thanks for your reply. I had a telephone consultation today with the GP and as soon as I said my feet hurt (as well as my hips and shoulders) he immediately said it wasn’t the PMR and not to take any steroids 🙄 He has arranged for me to have my ESR tested and then said to go and see him.

[PMRpro Ambassador in reply to Purplelamp]

Rubbish - PMR can affect feet and hands too. Prof Mackie in Leeds did a study - unfortunately, she hasn't published.

bpac.org.nz/2023/pmr.aspx#:....

says "Pain or stiffness in distal joints can be present in approximately half of people with PMR; examine the hands, feet, knees and elbows for signs of joint inflammation."

Of course there are doctors who assert "PMR never involves feet" - but that just shows they are poor doctors, A good one will never say never - because at some point they are likely to be proved wrong!!!

[Purplelamp in reply to PMRpro]

Thanks for this, I’ve saved it x