Started on 20mg pred. Reduced to 8mg by November. Pain returned. Struggled walking. My excellent gp sent my to rheumatologist, who put pred back to 15mg, referred me to neurologist ' all ok, and physio at end of this month. I have mainly upper back pain which seems to circulate! My problem is my right foot. I fell in April last year, exray ok. But it always gives me problems when walking. Swells along the top of foot and down right hand side. Can this be due to to pmr or steroids.
I have to say I feel blessed that my symptoms are nowhere near as bad as a lot of those posted.
Sounds feeble but this really gets me down.
Best wishes to all.
Nb. Kathryn us recovered and doing well!
Written by
annihami
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I think it could be damage from the fall which is making itself noticeable because although you had it X-rayed, that will only show damage to the bones - it won't show up any soft tissue problems. Go back to your doctor and either ask for a referral to an MSK clinic and/or an MRI. I think now that the latter have to be ordered by consultants, so the sooner you get to your doctor the better. (MSK = musculo-skeletal, MRI - Magnetic Resonance Imaging).
Hi Annihami! Welcome and I am also glad to hear your daughter is doing well.
I'm glad you have a good GP - but it is a shame he reduced your pred so fast because had he gone slower you wouldn't have had to go back up so far! And no, it doesn't sound feeble to say it gets you down - it gets all of us down every so often! Constant pain and life-changes are difficult for everyone and you've had more than your share of stress.
The rheumy group in Bristol reduces at a rate of 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year and find this works far better than the usual reduction schemes - it takes at least 15 months to think of going below 10mg! Doing that they have a flare rate of 1 in 5 instead of 3 in 5: the main cause of flares is reducing too far or too fast. It is that simple. I go even slower - even from 15mg I did 1mg at a time after the last major flare and I don't even doing it overnight, it takes 5 weeks to drop the 1mg! Before that, in over 3 years I never got below 9mg without a flare. This time I've got to 5mg so it does work!
Anyway - your foot: yes, PMR can cause foot pain and swelling (lots of doctors don't agree but I know plenty of patients with problems) but it does usually tend to be in both feet. Since you said you fell I would be inclined to blame that. I do wish they'd bear in mind that an x-ray shows bone damage but the ligaments and tendons that hold the bones together aren't shown - you need CT or MRI scans for that. A good orthopaedic doctor or a physio would diagnose it by the way the foot moves (or not). I assume you are seeing the physio for the back problems and whilst they MAY not be willing to look at your foot without it being mentioned on the referral, they should be able to tell you if you have ligament damage and what can be done. The UK is very poor at dealing with this sort of injury, they look at an x-ray , nothing broken, and that is it. Here, where I live in Italy it is a ski area - they are more interested in getting us back to skiing and we get excellent orthopaedic care!
No, not "feeble", at all. Hardly any of us will have escaped periods of feeling weak and useless, and on top of PMR, you have had all the worry of your daughter's serious health problem. You did amazingly well to get down to 8mg from 20mg after only 7 months but obviously a little too fast, hence the flare, which can be very common in the first 12-18 months of treatment. I'm so pleased to hear that Kathryn has recovered well - in my book when all is well in our children's world, no matter how old, then all is well in our's!
Polkadot has given you some wise advice for your continuing foot pain - it may simply be that some gentle physio treatment (ultrasound, heat, massage) may help. I do hope so.
Thanks to all of you for your support and sdvice. Will take foot back to gp! He's pretty good. My physio was booked in December. I was sent a form to fill out indicating painful areas. Will slip foot on! On a light note. When I fell it was outside Waitrose and I ended up covered in 2 litres of semi skimmed milk! Thanks again. Ann
I snapped a tendon and it took me six months to get a diagnosis, in that time, I had numerous x-rays, strapped up for six weeks (severe sprain diagnosed) then plaster for six weeks and finally a moonboot.
I eventually had an MRI - result at last. Keep pursuing it.
In Oct last year I suffered a lot of pain the left ankle, which made it extremely difficult to weight bear on it, it would swell over the foot and outer ankle. I am fortunate that I work as a nurse on the orthopaedic ward, and the foot specialist had a look at it for me. X-Ray was fine, but he diagnosed a stress fracture due to long term steroids. Stress fractures don't tend to show up on X-ray in the early days. I ended up spending 10 weeks in a walking boot, not a great site for a nurse walking up and down the ward. I should mention I do have osteopenia diagnosed at the start of steroids and have been taking Alendronic acid. Hope yours settles soon, regards Runrig
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