Help please. I'm currently reducing my steroid dosage by the very slow method recommend by many on this wonderful site. So far so good I'm down to 8. Were still away from home being 'old age travellers.' My problem has started this last couple of days when I'm walking. Horrendous cramp in both my feet and toes. We've been enjoying some very hot weather in the south of England and I'm aware of the problems associated with hot weather and loss of salts in your body. I've upped my intake of salt, we have a very low salt diet because of my husbands heart condition. When I started with PMR and before I was diagnosed the doctor did tell me I was deficient in sodium and suggested I up my intake, advice I followed. Today while out in the town the cramp came on this time in both my feet. I called into a chemist and asked advice. The pharmacist wouldn't recommend anything over the counter because of the steroids and the length of time I've been taking them, suggested I talk to my doctor. We're not due home for another couple of weeks. Please can anyone suggest anything? Is this a common problem, something else to expect with this dreadful disease.
Cramp!: Help please. I'm currently reducing my... - PMRGCAuk
Cramp!
A magnesium supplement may help. If it is indeed a magnesium deficiency you will probably get relief quite quickly.
Thank you. Will go back into town tomorrow and try the whole food shop for a magnesium supplement. I had forgotten magnesium deficiency. I have a friend who does a lot of long distance walks. She uses a magnesium rub, think it's oil based. The chemist suggested I drink tonic water for the quinine. That's not a problem I'm very partial to tonic water especially when it contains gin.
More to drink - but not just plain water. This is one of the places I would suggest there might be a place for isotonic replacement drinks! But not the high carb sort that are aimed at sports persons. Cheaper but just as good is equal volumes of fruit juice (pure fruit juice) and water with a pinch of salt added - perhaps a bit more since your doctor has told you you need it. In Germany they advertise alcohol-free beer as an isotonic drink for athletes (just saying!) 
A common cause of cramp is also lack of magnesium - it is the first thing the doctors here in central Europe suggest. They tell you to try that first, if it doesn't work, then they look further! Chemists sell various versions - here in Germanic Italy so do supermarkets
Being on steroids causes loss of sodium and magnesium through your urine - so you may well need more, especially in the heat.
Thank you. Will go back into town tomorrow and try the whole food shop for a magnesium supplement. I had forgotten magnesium deficiency. I have a friend who does a lot of long distance walks. She uses a magnesium rub, think it's oil based. The chemist suggested I drink tonic water for the quinine. That's not a problem I'm very partial to tonic water especially when it contains gin.
Hi Zoe an,
My daughter-in-lawsuffer from salt deficiency and takes solvable sodium tablets daily - available from most supermarkets. May help.
Hi jean56
Oh my days - me too!! The most horrendous cramp in my feet and toes and I have a pretty high sodium/salt diet! I mentioned this to my (wonderful) GP a couple of weeks ago and asked if it was yet another side effect of the steroids. He simply said "yes"!
I'm down to 2mg now and I think (fingers crossed) the cramps are easing!
I see my rheumy in 2 weeks time - be interesting to see if he comments on it too!
Blessings xx
It is a side effect of pred - makes you lose magnesium through the kidneys. But one of the easily solved ones!
It's such a comfort to know I'm not alone with this problem. I thought it would be the steroids, another 'fun' aspect of the medication, but thank goodness we do have the means to combat the pain and stiffness of this disease. Plus having this wonderful group of people who are willing and able to share their knowledge and humour....another important factor in coping. I do hope your medication reduction continues and the cramp decreases. It's 'fun' walking along the street and suddenly being brought to an abrupt halt with both feet in a pain. People following were not very impressed! Tough I thought!
I have this problem and I am on 8 mgs of prednisone now for PMR. My doctor said it was because of my anemia. I take iron every day. I have chronic anemia and the iron is not getting my muscles deep enough. I may have to have iron infusions. Do a little research on the kind of magnesium you need to take for your muscle cramps (if indeed this is the case). There are so many forms on the market it will make your head spin. Some forms of magnesium are not going to help the muscle cramps.
Thank you. Nothing is ever simply! I know I'm not anemic, one good thing at least. Will do more research. I am careful about taking supplements, having an underactive thyroid. Not just what I should take but when. Several years ago the doctor decided I should have a calcium supplement but neither he nor the pharmacist told me not to take the calcium at the same time as my thyroxine. Only after several months of feeling dreadful did I find out the reason and no thanks to the doctor. It was an article in a newsletter from the British thyroid foundation on just this problem. The advice was not to take calcium within 4 hours of taking the thyroxine. It would have helped if this had been mentioned at the start! Both the Doctor and pharmacist apologised but it shows how proactive we have to be, question and research. All this on top of feeling dreadful. Good luck hope you feel better soon.
There is something about not taking another common supplement at the same time or close to taking the prednisone, but it escapes me right now. Anyway, just to be safe I take the prednisone in the morning after breakfast and the other supplements 4 hrs later after lunch.
Calcium should not be taken at the same time as pred - 2 or 3 hours spacing is advised.
I never take anything now without first checking with both the doctor and the pharmacist, what, when and how. It's the proactive, belt and braces approach I think we have to take no matter how ill we feel. The error over the calcium and the truly ghastly time I had over the six months. The doctor sending me for some really unpleasant tests, when all the time it was the fault of the timing of my chewing the lemon flavoured calcium tablets. You learn....eventually! Thanks for all our advice.
I was on Medrol (methylprednisolone) and given a quinolone antibiotic for a UTI (total overkill anyway). A week later my achilles tendon started feeling very tight. It is a known sideeffect of mixing the two - neither the GP nor the pharmacist had said anything and it never occurred to me until it happened. The result was 9 months on crutches and pretty much the end of skiing - haven't found the courage to try again.
I'm not surprised you're hesitant! Before I was finally diagnosed with PMR, my doctor thought it could be vitamin D deficiency. He prescribed tablets. Which when I collected turned out to be tablets given to people with kidney problems and Vit D problems. If I had taken them heaven knows what they would have done to my kidneys. Thank goodness I now have an excellent pharmacist and I see another doctor. The first doctor having thankfully retired! Like many on this site I do take a Vitamin D supplement which I take in the evening.
I wanted to update on my leg cramps! Last night they started at 4 am and carried on every 20 minutes or so until I finally got up. Once I'm up, they stop. My hematologist called me today with my latest test results. My anemia is much better. From 8.4 up to 12.5. My ferritin levels are good, my magnesium levels are where they should be as well as my potassium levels. He could not find any cause for my leg cramps except that it may be neurological at this point. He prescribed a low dose of gabapentin for me to take at night before bed. If it is indeed neuro related, he said this should help. I am willing to try as I am losing sleep everyday. I am NOT fatigued anymore and I am down to 8 mgs of prednisone and tritating well. I don't want my loss of sleep to be my downfall at this point.
I am reading the side effects now - maybe I shouldn't have! Lol
Your blood magnesium level may well be OK - but it doesn't always reflect the levels in the muscles which, in the case of cramp, is where it matters!
Looking into the best magnesium supplement for the muscles. Seems to be Magnesium Malate - 600 to 900 mgs daily recommended. I am going to try this first before I do the gabapentin for my leg cramps......
I do hope you find a solution very soon. I've had a few disturbed nights with cramp but nothing like when I've been out walking, that really did stop me in my tracks and nothing like your problem. I'm drinking tonic water at the moment each evening, whether it's working or not, or if it's the cooler weather, but so far so good. We are so lucky to be able to access all this wonderful advice, from people who understand and who are willing to give their time. It's great your not suffering fatigue, certainly don't want to now suffer broken nights. I'm down to 8, no pain but the fatigue is not good. I'm not back to shuffling around but everything is such an effort. But as people love to tell us, 'oh, but you look so well.' Take care.
I purchased magnesium Malate by Source Naturals and I took it last night. No leg cramps last night or this morning. Hoping for the same results tonight......
My leg (calf) muscles weren't "twitching today either. Hoping for the best!
I will keep my fingers crossed for you, long may it continue. I had twitching muscles and a twitching eye when I first started taking Pred, thankfully that has stopped. I found the eye twitching very annoying.
Dear Jean56,
Either 'Make Up', or buy, an Oral Rehydration Mix for yourself. This way YOU can get 'Extra' Salts, WITHOUT affecting your Husband. I can't remember, off hand, the exact formula but it is easily available on Line. The Normal formula does not contain Magnesium however, I'm quite sure, some Epsom Salts (Magnesium Sulphate) could be added. I would recommend having a 'Word' with your local Pharmacist- who will probably advise Buying a 'Made Up' Product, there are Plenty available. (Incidentally These Products- Yes the same ones- have SAVED Many lives, mainly babies, in Africa by stopping Diarrhoea and Vomiting.)
I hope that you find Relief Jean....Cramp is Horrible, especially at night.
AndrewT
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