I am 64 and was diagnosed with CML 5 years ago. I have been taking Glivec for over 4 years and am currently taking 600mg a day. Every day I get muscle spasms and cramps in my feet, legs, hands and arms. They last from 2 minutes up to an hour and are worse in the evening and night in my feet and legs. I tried quinine but it did not agree with me. Can anyone offer any advice on alternatives ? - Jean
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Muscle cramps and spasm
Dear Jean,
this is a very common side effect and can be extremely painful. I did suffer a lot from this when I was taking imatinib (600mg) and found that the only way I could control the cramp like pain was to make sure I did not let my muscles get cold. If that was not possible then I found that using hot water bottles/heat packs really did help lessen the duration of a spasm.
I also found that walking and stretching exercise helped as well as making sure I took an adequate daily mineral supplement that included calcium and magnesium in the correct balance. Many of us are very low in magnesium so you could try to supplement with this mineral. I personally use a liquid form that is absorbed through the skin. I buy this online.
I hope this helps.
Sandy
Hi Jean,
I have had muscle cramps off and on ever since I have been on Glivec, nearly 5 years. Mostly they are quite mild and, when they are in my fingers and hands, almost funny. But leg cramps, which I tend to get at night, can be very painful and the effects can last for several hours.
I have found that eating bananas is quite helpful as they are a good source of calcium. Might be worth trying.
John
Hi Jean
Sorry to hear of your cramps and pains - as Sandy says this is quite a common side effect of Glivec. I have suffered with this for the past 8 or 9 years. I too get it particularly when my muscles get cold - cold beds seem to kick it off straight away. I also compete at athletics and it's happened a few times on the starting line on cold days - looks quite funny when the starting gun goes off and all I can do is fall over!
I find that keeping myself hydrated- 2 litres per day helps. I seem to get it especially on days when I don't drink enough.
I've never tried any supplements, just quinine which I found ineffective - always seemed to work for sports cramps in the preCML days but doesn't work for Glivec cramps.
About 6 months ago my consultant dropped my dose from 600mg to 400mg and the cramps are a lot less severe and common now.
Take care - hope you find something that works for you.
God Bless
Peter
Peter Miles
Southport UK
Yup, me too whilst on Glivec...really bad at night and when putting shoes/socks on or getting in cars!! I did get a little relief from drinking small amounts of Schweppes Tonic Water throughout the day,(not the copies) but this is just quinine really. Couldn't take the quinine on its own because of the diarrhoea. I think Sandy's calcium and magnesium could be the way to go next.
Good luck with it, you have my every sympathy as I got heartily fed up with the night times.
Vickie
I still get cramps:
In my left foot
In two left toes
My right hand
In two fingers
Very particular
I also get cramps in ankle (of course left side)
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Like others eat bananas
Have massages once a fortnight - feet and hands included
Cramps are definitely a cycle for me and I now feel that is every perhaps 3 weeks or so or when I am particularly fatiqued.