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stiffness in muscles in hands and cramps in legs on Glivec 400mg

Ever since starting Glivec 400mg a day in 2006 I have been experiencing stiffness in my hands especially which makes my fingers lock in awkward positions and is quite painful at times. It comes on and off on different days and at different times. It got especially bad yesterday when both my hands stiffened and locked for quite a long time - longer than usual. I have also had this in my neck and sometimes in my feet. I have also had bad cramps in my legs, especially at night, but this is something I have had for ages. Nobody seems to know what causes cramp as I have asked many people, but a doctor in Plymouth told me a while ago that Tonic Water is meant to help, so I am trying that for a while in the evening to see if it helps. Has anyone else been experiencing this strange stiffness/locking of their hands whilst on Glivec?

Louise

Hi Louise

I've been on 400 mg Glivec since May 09. I have all those neck/feet/back/arms/legs/hands cramps to a lesser or greater degree, and have had them more or less since I started Glivec I think. All the cramps tend to happen with me after I've been lifting something or bending/twisting even a little awkwardly. I sometimes get the hand cramps after removing the cork from a bottle of wine... It can take me several seconds to remove the corkscrew from my claw like hand afterwards. Still, a small price to pay for the end result... They always go away after a few minutes but it does vary. Haven't really tried anything to avoid them because they don't really cause me any problems apart from a little pain and discomfort. If I were, say, a rock climber I might do something about it though!

Have heard the same about tonic water but not tried it.

Good luck

Richard

Hi Richard,

Thanks for your reply.  Good luck with everything.

Louise

 I have suffered cramps since starting Glivec in 2005, hand cramps are quite common for me, and I often get very painful cramps in the muscles between mt ribs. My top two most painful are my jaw, when I yawn sometimes, and once, when I was in an important meeting my toungue cramped, the look on the managers face was a picture as I was trying to talk, whilst tears of pain were running down my face.

Craig

I have been experiencing these since i started on glivec 2 years ago. The best thing i found to control the cramps is to eat banana's. This seems to work well and has greatly reduced the severity of the cramps. In relation to joint pain i suffer extreme pain in most joints. To control this and funtion i use diclofenac sodium 75mg twice daily at the moment, without that i would not be able to move and the pain is unbearable. I have tried most thi gs o help my joInts nothing seems to work others than diclofenac.
I hope this helps.
Yours in the cml club
Stuart

Hi, Louise,

I was on Imatanib for 7 years and have now been moved onto Dasatanib. Whilst on Imatanib 400mg I suffered bad cramps and it was worse at night/morning. I was precribed quinnine to be taken at night by my consultant and it workded very well. Over the years on and off I stopped taking it for a few nights to see if maybe I didn't need it but the cramps woke me up in night and in the day feet and hand would often go into spasm. Since I have been on Dasatanib I no longer have cramp and don't need to take it anymore..  wonderful.. however I now have pins and needles in hands and other parts of body on and off..all the TKI's seem to have some side effects that we just seem to have to tolerate because of the wonderful thing that they do.. control our CML.

Best

Michelle

hi, been on imatinib for 4years 800mg, had cramps from the start  was prescribed quinine 300mg daily and had no cramps since, hope this helps!

regards tc

I really do recommend magnesium oil- you can get this in spray form at most of the high street chemists etc. you can also buy it online. 

I did not take it with me on holiday and have noticed the return in stiffness and strength both of joints and muscles over the two weeks I was away.

Best wishes,

Sandy