PMR/GCA and Sore Feet!

Sounds really uncomfortable. I have read on another board an experience that sounds very similar from someone else - the cause in her case was that it was a side effect of the prednisolone.

Margaret

Dear Margaret - thank you so much for replying to my query regarding any other PMR/GCA sufferers with sore soles of feet. I'm relieved to say that in the last few days I have been able to walk much more comfortably foot-wise - I don't know whether it was the polymyalgia finding other joints to invade or whether, as you suggested, it was simply a side effect of the Prednisolone, which is certainly very interesting and a point which I will put to the rheumatologist next time I see him in April. As it got to my feet I wondered if it was finding an exit point from my body and if the Giant Cell Arteritis finds an exit point out of my head as well, I will be more than happy!!! Thanks so much for taking the time and trouble to reply to my experience - this site certainly helps you to stop you feeling so alone with these conditions, doesn't it. Best wishes, Mrs O.

Dear Mrs O,

I, too, have had problems with the balls of my feet, which feel as if I have pads attached to them so that walking barefoot or in flimsy soles is very uncomfortable. Crocs in the house and solid walking shoes have really helped. I assumed that it was one of the weird ( and not very wonderful!) side effects of the steroids. It seems as if each time I reduce (10 mg now) I lose or, at least, have a lessening in one area- not as full a moon face for example- but something else appears. One of the problems of the whole PMR experience seems to be in differentiating side effects,the symptoms of the disease and the normal aches and pains of one's age, which are almost certainly going to be exacerbated by the steroids anyhow.

By the way the weirdest offshoot for me was a passion for baking cakes, something I'd never done!

Best wishes, Mrs EF

Dear Mrs EF - many thanks for replying to my sore feet experience and for your suggestion of crocs in the house and solid walking shoes. I actually discovered that discarding my slippers in the house and wearing shoes appears to have done the trick. Happily, it seemed to remedy itself after about two weeks - I hope, as you suggest, that it is not a side effect of the steroids as, today, I have had to increase up from 4 mgs to 10 mgs! Inflammation markers had not returned to normal since blood test two months ago and pain and stiffness intensified very suddenly yesterday. I had been doing really well but believe I overdid it with two very long walks during Easter week (my husband planned the walks and hadn't thought they would be so long!) I think the most I can manage appears to be about 30 minutes. I was very depressed yesterday about having to up the steroids but as I have GCA as well as PMR, I know it is critical for my eyesight. Snap - I, too, have been doing a lot of cake baking in the last year - how weird is that?! I try to bake mostly teabreads that contain no fat and I reduce the sugar for fear of putting on too much weight. However, I failed over Easter, making the mistake of baking a simnel cake!!!

Best wishes and many thanks, once again, for replying.

Mrs O.

Dear Mrs EF

I have had painful hot stabbing and inflamation in my feet for two and a half years and have tried everything except going back on steroids - as in fact (despite having a typical symptoms of PMR) they did not work for me; nor did they make any difference to the state of my feet. Initially I went to see a qualified chinese medical herbalist my boss recommended - how i got there was by my son pulling me up the hill after getting off the bus! I did not want to go on steriods as my Mum had terrible symptoms like cataracts depression, horrendous infections all the time ect. He put me on a high strength ginseng called sarcandra glaber/radix notoginseng. This worked so I actually leapt out of bed after two doses.

This worked really well for me for about a year - then suddenly stopped working. I went to GP an had a steroid injection i layed on sofa for three days - and nothing happened. I then pulled myself up and started to do Ti Chi exercises on a DVD i bought of i'net - this made me less stiff and really helped. I then under recommendation from a friend went to a Microbiotic Diet Specialist who took me off dairy food and gave me recipies with mainly grain and rediculous abounts of veg (for calcium think of cows eating grass) and 'mochi pancakces which are really good for red blood cells and anemia which goes with the condition. I was also taking a lot of vitamins which i got from searching internet under 'PMR without drugs' or words to that effect. After 2 weeks of being on that diet with no dairy especially cheese - my rheumatism just went away - I had had really bad pain through my wrists especially and all my joints were swolen. I am now well not on any drugs and getting energy back naturally, I still have occasional pain in the sholders, for this I find exercise swimming and lifting light weights at the gym is the answer; however my feet still hurt and it looks like they are 'skin and bone'. The podiatrist said he thinks it is PMR in the feet! No one else seems to have this - they are better than they were, but this is very slow - how do you put muscle into feet?

Mrs J

Hello Mrs J

You may not get a reply from Mrs EF as her post was some 5 years ago, so I'm replying just in case!

I have had pain in the soles of my feet for many years now, before PMR and since (off steroids for 8 months now) - it feels like walking on bare bone, and I absolutely can't walk on cobbles. Apparently there is very little flesh, and very thin skin on the soles and, as a result, I suffer from loads of hard skin and seed corns which have to be removed at the local clinic every two months. My Mum had exactly the same problem.

At least it's good news to hear that you've found ways to beat PMR - I thoroughly recommend Tai Chi, too.

Before PMR, I was measured and fitted with leather orthotics and the problem resolved only to return during PMR. The latest advice from the podiatrist is to try and get shoes with the thickest soles possible.

Hello

Thanks for replying - It looks as thought we have to live with this then! I guess it will go eventually. I am walking less than i ever have and go in the car to town rather than walking - I use thick inner soles when i walk the dog. The soles of my feet however are softer and fluid like; but just like you described about the bare bone.

I think sometimes that because this PMR condition only effects mainly women of a 'certain age' who are usually not working; there isn't a lot of research done on it. The GP said he admitted know one knows what courses this terribly painful desease - so how could they really treat it? My PMR started at 59 just when i wanted to go part-time at work and the result was i was so ill i had to give up the job anyway; I was a qualified Mental Health nurse. It appears that it is hereditory - however although my Mum had it my husbands Mum has just got it and there is none in her family. Also, so many more women and men are gettng it. I only just found out that it's an arthritic disease - so the cold and wet won't help. I also found some evidence on the net that it could be some strain from a virus! I was told sharply by a specialist that a 'person with my condition' should always be on steroids, even though they did not work for me. He wanted to take a bit or artery from the side of my head (due to prevous headaches, which had gone away)and operate of my back due to my foot problem; i said 'no way' at which he was very surprised. After that I never went back to him or my GP about PMR. Who knows what the future will be like. Thaks a lot for your reply though.

Mrs J

Mrs J

Yes your GP is right in saying that there is at present no known cause or cure for PMR - the steroids do not cure the disease, they just damp down the inflammation that causes the symptoms.

In the absence of a known cause, many theories abound, with some sufferers blaming a recent virus, some blaming statins and often there is a genetic link. But happily there is now much research going on, there is the Charity, PMRGCAuk, helping to raise awareness, and support groups are springing up across the country. Hopefully one day there will at least be friendlier medication available - meanwhile thank goodness we do at least have the steroids to enable us to have a reasonable quality of life whilst the disease runs its course.

I'm sorry to hear your illness meant you had to give up your job - it sounds as though it was a very demanding one so it would have been very difficult to cope especially with the fatigue that goes with the illness. I hope you will continue to improve.

MrsJ - I had very similar foot pain in the early days of my PMR which was undiagnosed for 5 years. However, after being put on pred it improved over the following year and now my feet are fine - I just have left-over PMR if I don't take pred. But - when I was given pred the majority of the symptoms improved dramatically within hours, it was the synovitis symptoms that took much longer to disappear.

If you didn't respond to the pred by about 70& of your symptoms improving within a week (often less) then the chances are you didn't have what is described as "pure" PMR. The response to pred is regarded as fairly definitive. If the symptoms only improve a bit then an alternative cause for the symptoms (there are several) should be looked for. I have recommended a paper from the group in Bristol, led by Professor Kirwan, dealing with this way of categorising patients on another thread.

It is accepted that there is a combination of underlying contributory causes - one almost certainly a genetic one that accounts for a tendency for PMR to appear in more than one generation of a family. It isn't hereditary in the narrow sense of the word though. It is probably a set of triggers including environmental and possibly infectious components that leads to it appearing - and stress seems to play a big part too. It is likely to be an autoimmune process - like in rheumatoid arthritis - and in many ways it is similar to RA but without the joint erosion and rheumatoid markers. The viral trigger has pretty much been ruled out now - it was one of the "oh look what we found in these patients..." headlines, like cancer and all sorts of things, but there are enough patients with PMR who don't have the viruses they wanted to blame after all.

Your rheumatologist was obviously concerned you might have had giant cell or temporal arteritis which is closely related to PMR and untreated can lead to blindness and stroke. Untreated PMR makes you even more at risk and that is why he wanted to check - not that the biopsy he wanted to do is 100% accurate but if it is positive it is a certain diagnosis. And that is also why he was so keen for you to take pred to reduce that risk. But if it didn't help the PMR symptoms he was probably barking up the wrong tree. He should have looked for other causes though.

However, all the best for the future,

Eileen

I get pain in the ball area of the feet occasionally but more frequently in the hands and knees. These are areareas that have swollen since taking prednisone, so I am wondering if it is some side affect of the prednisone.

Hello murray2

The swelling around your hands and knees can be both due to the treatment itself and to the inflammation of PMR resulting in a build up of fluid in these areas. I had such swelling both before final diagnosis and during treatment with Prednisolone. I sometimes used to resort to wearing elasticated knee and wrist supports which helped to relieve the pain but rest assured that as the inflammation subsides and you reduce the steroid dose, it will improve. Meanwhile, do try and keep up a daily walk as far as pain allows, and some people have also found it helpful to do some gentle exercise in warm water pools.

Snap - I was the same as MrsO. I definitely had foot pain as well as hand pain before pred - and I had had knee pain long before PMR was diagnosed. All have eventually disappeared after being given pred, it just takes longer.

More than 18 months ago I was put onto Medrol, methylprednisolone, instead of bog standard prednisolone with which I had had little problem with swollen feet. On Medrol they definitely were like balloons. A year ago I was switched to Lodotra, a form of prednisone you take at bedtime, and all the swelling has now gone, my feet are back to normal as pre-PMR. I have just looked at a pair of sandals I bought soon after being put on Medrol and they fasten a good inch tighter at the ankle than they did then.

In the meantime I have been treated for atrial fibrillation and high blood pressure (only found after a nasty drug reaction but obviously it had been present for some time). It is difficult to tell if the swelling was PMR, pred or something else (I'd never had a bad BP level when it was checked randomly) so although some was PMR, some was probably pred. If it is a problem ask your GP to check your BP every so often (they should be anyway).

Eileen

foot pain and hand pain started for me before i began pred. most of the hand pain is apparently from carpal tunnel triggered by swollen wrists and hands. foot pain is consentrated in the ball area and may be some kind of neuropothy. not as bad a pain as most of the other stuff but how long will that last?i will post again if i find some help on the foot thing. pred really saved me. i was near eatting a nine.

foot pain and hand pain started for me before i began pred. most of the hand pain is apparently from carpal tunnel triggered by swollen wrists and hands. foot pain is consentrated in the ball area and may be some kind of neuropothy. not as bad a pain as most of the other stuff but how long will that last?i will post again if i find some help on the foot thing. pred really saved me. i was near eatting a nine.

ronnie