I was diagnosed just about 24 months ago to the week. My hands problem at the time, I thought was carpal tunnel, but together with my legs and shoulder issues, it was determined that I had PMR. Which I do.
Pred stopped the hands, should and leg problems. (Which confirmed the diagnosis too.)
I am now on 5 mgs of pred. I am an aggressive winder-backer of pred. I love its symptomatic assistance, but I truly hate the stuff, and wish to be free of it.
But I am cheating and have dropped my dose to 3.75 mgs. And it is getting me back in the hands and shoulders. But not too badly I must say. So, I am sticking to 3.75 because the symptoms are quite tolerable.
I feel terribly sorry for myself, but see others much worse off.
I was originally of the idea that it lasted for 2 years, but sadly there are plenty for whom it drags on.
Sometimes I imagine that the soles of my feet feel weird. However, I read an article by a doctor who said PMR never gets ya feet. So, I attribute the sore feet to my running.
I am a 60 year old Australian male.
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DelilahPMR
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Sorry but article you read is wrong - many get issues with feet as well as hands - there are plenty of posts on here about it - this is just one from a couple of months ago -
…and yes PMR can and does last longer than 2 years….so just be aware that at 3.75 although your symptoms may be “tolerable” (assuming it is PMR) if you ignore them and allow the inflammation to build up, they could become worse.
Even a small increase (maybe only required temporarily) - say back to 5mg (which will give no adverse side effects) might stop the rot.
Hello there from cold, wet and windy UK. Though you say you’re Australian, you might be here too however.My first question is, what makes you hate Pred at your current doses? Is it the side effects or being tied to a medication?
One thing to bear in mind is that it isn’t just providing symptomatic relief like a Paracetamol, it is stopping inflammation that can be damaging in the long run, even at small doses. What you don’t want is to be toughing it out but end up with longer lasting disease and the eventual need for going up to much higher dose because you get a major flare and can’t function so you have no choice. Of course there the much feared GCA and large vessel inflammation too. Also, go too fast at the end and you can be hit by monstrous fatigue from the adrenal glands not being able to make up the short fall because they’ve been not needed for so long. It is well worth reading the bit about adrenal function in the FAQ’s so you can recognise it and act accordingly.
There are enough people on this forum who can say the feet can be a problem, even though some docs are of the mind they are not involved. There are other auto immune problems that can affect feet too that also need Pred.
Men do seem to have a quicker path through this but you can’t force it I’m afraid. I’d go back to a dose that relieved your symptoms and reduce more slowly from there. If your feet improve, there’s your answer on that one too.
Quite warm in fact. It was 31 today, but 27 now. And as it is doing now, it rains at night before blazing sunshine and heat the following day. I hope you get sunshine, warmth, and rid of your PMR shortly DorsetLady.
I don’t have PMR - never did, but had GCA - more complex and tiresome in lots of ways. View my profile if interested.,
Further to 123-go comments - would agree - you need to accept what you have - maybe look at this link - acceptance is not giving in as some think, it’s being realistic and taking control in a constructive way -
Well stated. Thanks for this. I do listen, and have a great physician who I can call anytime. He says because my symptoms are so mild, to see how it goes for a week or so. Fingers crossed...
Hello Delilah. I'm going to be blunt. I feel that, deep inside, you know that your approach to your condition and medication may be skewed. Why do I believe this? The terms you use like "aggressive winder-back", "hate the stuff", cheating" are clues. I'm no psychologist but I feel that you are seeking affirmation for your actions while at the same time acknowledging they may be leading you on to a rocky road.I may be completely mistaken but I sense that you are effectively saying that you know what you should be doing in terms of tapering while denying the truth because you want to be free of the medication. Why would you stay on your current dose of 3.5mg Pred when you are experiencing a return of classic PMR symptoms? "Tolerable" suggests that you are putting up with the pain but are not entirely satisfied.
If you want to achieve remission you have to follow the correct path to avoid a flare and a return to higher doses.
The strange feeling in the soles of your feet may be caused by excessive running but the return of PMR symptoms can be a sure sign that your Pred dose isn't sufficient to manage the inflammation in your body.
I am not condemning your actions but am making my own interpretation of your post.
A study done in Leeds, GB, found that hands and feet ARE often involved in PMR. I had a lot of foot trouble early days - swollen which meant I needed a size larger shoes but it felt as if I was walking in shoes that were a couple of sizes too small and had insoles of a mix of pebbles, grit and broken glass. It was worst when I stood from sitting and for the first 20m walking after which it eased off - didn't go away though. I have heard a lot of people saying similar things.
I agree with everything DL, Snazzy and 123-go have said so won't repeat it but I WILL warn you that if you persist with "putting up with it" because the dose is only 1/4mg too low to entirely manage the inflammation it will build up and eventually, not next week maybe but it might take a couple of months, you will be back where you were originally. You don't appear to realise it, but pred is your friend and allowing you a half-decent QOL. The alternative is to try to manage PMR with no pred - you might as well as take too little - and having been forced to do that for 5 years, I really don't recommend it. The adverse effects of unmanaged PMR are very similar to those of pred - except it hurts a lot more.
My feet and hands were so swollen I could not wear socks, had my rings cut off my fingers. I followed my Rheumatologist taper from 20 mg Prednisone to 0. Yes, there were days I was tempted to take more but never did. I was down to 0 in 11 months. I still have muscle weakness and walk funny but feel well. It will be 2 yrs in Feb since my last pill. Feet and hands are still a bit swollen still but much better now.
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