I am currently down to almost 2.5mg daily. I take 3.75 about 3 days a week (cutting a 2.5 in half).
For a few weeks I have had a bit of pain in my right big toe joint and now all the toes on my left foot are tingly/achy too!
Do you think this is PMR related or the start of arthritis?
Being localised to toe joints. it doesn't really sound typical of PMR foot pain. Big toe joint pain is more typical of gout or arthritis,
Agree with PMRpro-see this link -
nhs.uk/conditions/foot-pain...
Thanks for the link 👍
Hasn't any kind doctor given you 1mg tablets so you don't have to drop by such a large amount at once? I also cut the 2.5mgs in quarters, so I can get 1/8mg differences!
I have heard there is difficulty getting the 1mg tablet but will definitely ask when I begin to come down below 2.5. I will also try the quarters too!
Problem is I am running out of my old uncoated 2.5 ones now. For some time now I have had the enteric coated ones and dropped Omeprazole. I suppose I could request a few uncoated ones perhaps. I imagine cutting the coated ones would be an epic fail 😅
Probably do-able but an expensive way of getting plain and it takes away the point of the enteric coating!
I have the same thing started about 3 months ago my doctor said its related to diabetes I've been on steroids for 2yrs now started at 40mg I'm now taking 3mg a day reducing 1mg a month my hair has thinned and fallen out dramatically and still is I was put on steroids for G H A
May I ask whether you've had Covid recently? My wife lost a lot of hair about 3 - 6 months after having Covid. It's all grown back now, and much thicker and wavier than it was before, but for a while she wore a wig until her own hair growth made it superfluous.
I’ve had PMR for eight years (still struggling to reduce from 10mg Pred) and recently my feet have become extremely painful - which is odd since I have bad peripheral neuropathy suggesting they should be numb. My toes particularly bad and yesterday the pedicurist had to battle with nails in growing. But the top of the feet also very tender and I too wonder if arthritis.
I am taking 7mg Pred, I have PMR, inflammatory arthritis and spinal stenosis. Have had painful,(sometimes numb ) feet for a long time, peripheral neuropathy has been ruled out. The tops and bottoms of my feet are painful especially on walking and standing, and I also think it could well be arthritis, maybe osteoarthritis.
Have nothing helpful to add but to say sorry you have more pain to deal with and hope there is a possibility of relief.
I have gout in one big toe (left foot). It is a bit like needles jabbing in to it but if I step on it - it stops.
Ouch! Mine feel bruised and sometimes hurt when I am resting. I have a call tomorrow from a “MKS “ practitioner at our surgery. I had to look that up. Musculoskeletal first contact practitioner “ apparently. Saves the Dr I guess?
Hope they are better than the twerp I saw - who informed me that if I could touch my toes there couldn't be anything wrong with my back and he couldn't! I still can at over 70 and despite a scoliosis and severe myofascial pain syndrome!
What a twerp indeed.
I ‘ve had a brain flash !
I can contact a PMR Consultant I saw when my husband had private health care at work. She was seeing me then every 2 months or so, When my husband retired she saw me (£150 a time )
At my last appointment, things were going so well on my current dose, she said see you in 2024. Only just remembered she said I could get in touch earlier if necessary. She is an arthritis consultant as well as PMR. I’m so stupid. Why have I only just thought of this!? 🫢
Nothing sensible to add but you made me laugh…I haven’t heard anyone called a Twerp since my elder brother called me that 70 years ago! (We’re still friends)
That’s a phrase that my mum used. You don’t seem to hear it these days.
I have toe pains and sometimes finger pains in addition to the regular shoulders and hips. Not very often but I’ll be walking or sitting and my toe has this sharp pain like a bruise or sprain, or I’ll reach for a door handle and have this pinging pain in Parts of my fingers, sometimes it even bruises the finger or the toes …then nothing for months. Can’t work out why but did read about a thing called achenbach syndrome. Sorry you have extra pain. Take care 😊
When I first was being diagnosed with pmr I had big toe pain. I even saw a specialist and she made a splint to raise it so I could walk. She couldn't find anything but wrote my Dr stating something is going on. It was the beginning of them taking me seriously. I got worse from there.
I'm now off prednisone 7 yrs later. Good luck
I have a sharp stab in my big toe from time to time and sometimes get a burning joint pain in my fingers - they go blue/red in one spot and swell then it disappears as quickly as it came! After a bit of research it sounded like Achenbach syndrome or paroxysmal finger haematoma. So that’s possibly what that was! But the big toe thing… I had what the GP suspected was gout when I was in my mid to late 30’s. Very nasty! It looks like it is making a re-occurance now I’m in my early 50’s, and my research points towards the links with rheumatoid arthritis, as I’m not overweight, don’t have diabetes or have kidney issues. Well, not that I know of! My KETO diet may not be helpful as it is high in fat, but my cholesterol is fine. Treatment is NSAIDS or steroids - as I’m on pred and not keen on NSAIDS because of the problems mixing them with pred. So there are meds out there that deals with high urate but you need to have a chat with your GP about it - Allopurinol or Febuxostat. A Rheumy may prescribe something stronger if these initial meds aren’t working. Good luck.
Thanks for that information. 🙂
Hello Sandyowl, I am on a similar dose and have had a couple of episodes of this pain in the big toe and then similar pains on other toe joints. I thought it might be PMR related as I was tapering but it went as quickly as it came and that was over a year ago. I've had nothing since but given that it hasn't remained for any length of time - I've decided not to worry about it.
That’s very interesting thank you. I hope my pain disappears like yours did. 🙏
I have the same thing
Numb toes 
Weird feeling in toes and wobbly walking
Tingling toes.
Tingling fingertips, toes and lips
Numb toes
