Looking for an answer: I haven’t been on here for... - PMRGCAuk

PMRGCAuk

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Clickangel profile image
14 Replies

I haven’t been on here for awhile because I was doing well. I have had PMR for for 3.5 years. When I started to lower my predisone I did well till I took a Covid shot. Had to go back up . Went for a year and was down to 5 mg. Doctor told me to go down 1 mg a month. I got down to 1mg but have stated in with hip and groin pain. My shoulders aren’t bothering me this time! I know I need to go up on the steroids but my question is that it is I. My feet and ankles. I can hardly walk. I didn’t think PMR would get into the feet. Thought it was the proximal muscles. Not sure what to do.

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Clickangel
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14 Replies
piglette profile image
piglette

I find if you increase the dose by 5mg for say a week. If you then feel OK then drop down to say 3mg and if OK reduce again.

Clickangel profile image
Clickangel in reply topiglette

Ok, but is it normal to be in a person’s feet?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toClickangel

There have been a few posts about this over the years - and yes PMR can affect feet/ankles, so try increasing as suggested by piglette

Clickangel profile image
Clickangel in reply toDorsetLady

Thank you !

Clickangel profile image
Clickangel in reply topiglette

Thank you! I will try that!

marionofnorwich profile image
marionofnorwich

I have a similar problem but with my thighs and knees, calves though my feet are mostly ok - all since Covid in April when i had reduced to 4mg. Now have had to taper back up to 10mg and trying to start a reduction from there. But can also barely walk due to lower limb stiffness

Viv54 profile image
Viv54 in reply tomarionofnorwich

I am going through exactly the same problem atm ! The pain keeps moving , but this has been the longest of these new symptoms . My legs feel like wood ! my shins ache my knees are so painful and i just cant bend my legs, at least you know your not on your own ! Hope you feel better soon. Viv🌷

Koalajane profile image
Koalajane

I would drop by .5mg instead of 1 when you go back to tapering

Clickangel profile image
Clickangel in reply toKoalajane

Good idea! I will try the lower dose. I was getting soo close when all broke loose!

PMRpro profile image
PMRproAmbassador

My PMR was very foot-related early on - felt like my shoes were a couple of sizes too small and had insoles of a mix of pebbles, sharp gravel and broken glass! I have heard quite a lot of patients saying similar things.

Recently I have had a bad flare and achilles problems mixed - and my feet swelled up quite badly. I am now on tocilizumab, it has just started to have an effect - and my ankles are back to normal. Which suggests it was inflammation of some sort.

SheffieldJane profile image
SheffieldJane in reply toPMRpro

Yay! 👏👏👏

tangocharlie profile image
tangocharlie in reply toPMRpro

I had a lot of feet problems in the first few PMR years. My feet were swollen and it felt like I was walking on marbles/lego bricks especially in the balls of the feet, every step was agony no matter how many different kinds of cushioning insoles I tried. It was treated as Plantar Fasciitis and I had steroid injections directly into my feet, which did the trick within days. One foot had to be done again a few months later but worked the second time. My feet also swelled up when I came off steroids briefly a few years ago. So I'm sure it was linked to uncontrolled inflammation, seems too much of a coincidence

PMRpro profile image
PMRproAmbassador in reply totangocharlie

I think so too - and you and I do appear to have similar versions of PMR.

JoLou12 profile image
JoLou12

My feet ache too, I have so many ‘comfy’ shoes but my feet still ache badly when I walk for more than about half an hour. I do use ibuprofen gel which does give some relief and paracetamol.

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