Diagnosed with PMR 4 weeks ago. Pain reduced dramatically within 5 days and now on 15 mg Prednisone about to reduce again to 10mg. Also taking all the protection medications as well and am on Beta blockers, Digoxin and Warfarin for Atrial Fibrillation. (18 years! ago diagnosed) Am suffering a lot with cramp and twitching in hands and fingers mainly, but right foot occasionally. Also foot feels cold with pins and needles.
Hello Mary
I'm sorry to hear of your recent PMR diagnosis but at the same time it's good to hear that the steroids quickly relieved your pain. You don't say what dose you started on 4 weeks ago and I'm assuming it was 20mg? It sounds as though your first reduction to 15mg has been successful but you would be wise to take a smaller drop next time to 12.5 rather than 10mg, otherwise you risk the pain returning meaning that you would have to increase back up again to get the inflammation under control. Hopefully, the extra little problems you have mentioned will ease as you reduce the dose. All good wishes.
Thank you MrsO for your input. My AF is under complete control. I have a doc's appointment on Friday 4th. Oct. so will check with him all my little PMR concerns. I am very fortunate to have such a good doctor.. And an amazing
"electrophysiologist?"?? at Papworth. I shall take your advice and reduce steroids slowly. Only 3 days on the new dose so doc can put me right on that one to. Incidentally ,If you haven't already sussed it out I am a well practised senior citizen!!
Just another voice to warn about NOT reducing 5mg at a time. It may work with other problems requiring pred but it rarely works with PMR. The usual starting dose is 15mg and the top bunnies recommend 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year before continuing the reduction. This is associated with a relapse rate of only 1 in five, far better than more rapid reduction rates. Many doctors are not aware of this work by Prof Kirwan in Bristol but many of us on the forums have experienced the downsides of too rapid reduction and ending up having to go back up to the beginning - and every time it gets harder.
In case your doctor would like to read it the reference for this reduction is:
http://dx.doi.org/10.4997/JRCPE.2012.413
It is freely available online.
Many doctors get very uppity about patient's own research and disdain "Dr Google" - this is straight from the horse's mouth :-)
Eileen
I forgot - they check links! It will appear soon-ish!
I have just provided a link for a paper supporting a slower reduction than your doctor is doing: 6 weeks on 15mg (the recommended usual starting dose in PMR) and 6 weeks on 12.5mg followed by 1 year on 10mg. It is a regimen developed by Prof Kirwan in Bristol and results in a very low rate of relapse - most flares are due to reducing too fast and too far and most doctors fall into the trap.
It appears in the Journal of the Royal College of Physicians of Edinburgh 2012 and your doctor should be interested in it.
Eileen
Hello there,
new today to this - but I don't see as yet a response to marytommo regarding the possible effects of preds' giving cramp in the hands.
To get the crippling effects of PMR Under control I had to take 30mg per day but if taken in one dose in the morning I was in trouble by 9.00 am the next morning up to lunch time. So I have a split dose - 20 mgs morning and 10 mgs at supper time. This gives me 24 hr coverage.
After 3 weeks on preds' I started to get cramp in my fingers and this has continued ever since with different levels of severity.
Has anyone else experienced this with PMR or the steroids. It has been suggested that Magnesium is leached out of the body the same way calcium is with steroids.
Any ideas ?
Euclid - I suppose both I and MrsO didn't have the problem so we didn't talk about it. What I have just remembered is that I had cramps in my hands whenever I wore gloves, especially in the base of my thumbs! But it wasn't due to pred - I had it in the 5 years I had PMR before I was given pred. So it wouldn't have occurred to me. One possible cause is the blood supply is reduced because of the swelling of the PMR and it can take a while for that to improve.
Muscle cramps are mentioned as a side-effect of pred - though it is hard to find reliable sources that include it. More often the quotes are by people who assume it is associated with the pred - but pred gets blamed for a lot even if it isn't the culprit. Somewhere at the back of my mind is that we have discussed this in the past but whether it was here or somewhere else I couldn't tell you.
I have lived abroad for many years and all over Europe if you get muscle cramps the first thing the chemist or your GP will ask is whether you have taken magnesium to try to deal with it yourself. We always have magnesium tablets in the house and use them regularly.
Eileen
Euclid
Yes, my experience with hand cramps is similar to that of Eileen in that I experienced them for many years before PMR and steroids. I have osteoarthritis in my thumb joints and Heberdens Nodes on the first joints of most fingers.
I also suffer from episodes of night cramps in my calf muscles - have had my magnesium and potassium levels checked and they are normal.
If your hand cramps appeared so soon after starting steroids, then perhaps asking for your magnesium levels to be checked might provide an answer in your case?
The "twitching" that marytommo refers to could well be related to the steroids as that is something I experienced in my feet and toes for a period of time whilst on the meds (very strange feeling) but it resolved on its own, probably as I reduced the dose.
Thanks to you both for a prompt reply - I will be seeing my doctor hopefully on Monday I will mention of course my hands and fingers then. You see I have not seen him for 6 weeks as i have been in New Zealand.
The Magnesium idea sounded good so I have purchased some today at 80% normal levels and have started to try it.
Thanks to you both again - I will let you know how i get on.
Euclid
Euclid - hope the magnesium helps so that you can enjoy Christmas free of those nasty cramps. We look forward to hearing how you get on.
MrsO