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Arthritis / leg pain from Glivec / CML?

Hi Kate

Sorry to hear how you've struggled initially with Glivec. As Sandy says, most people get cramps of differing levels of severity. In my case, initially they were more or less everywhere but mostly in my feet and back. The most severe ones however were in my neck in the first few months - really very painful.  It was like having a cricked neck for a couple of weeks and I had to take pain killers.  But that subsided and I haven't really had it since.  Now 18 months on I still get cramps from time to time but they aren't severe and usually caused by straining a little. You know how before you took Glivec if you strained in a slightly odd direction you might get a muscle twinge? Well now when I do that I get a cramp instead and have to do some yoga-esque maneuvres to correct it. It causes my work colleagues great amusement when it happens in the office! I had to warn them that if they saw me doing some odd looking movements at my desk that was why. So we can laugh about it now.....

Also, I too had a bit of a cell count dip to start with.  In my case it was neutrophils (pretty common for these to dip) but they recovered after about 6 to 8 weeks.  I understand that to be the result of initially clearing the duff CML cells (causing a drop in count) and the healthy cells then taking over production as it were (so the count steadily came back to normal).  Since then, all has been perfectly normal.  Hopefully in you case that will happen with your platelets - I would persevere.  It may be that given your high white count you had quite a lot of duff cells to clear so it may take a bit of time, and be a bit up and down during that time, but in the end I would hope it would work itself out.  It can be tough at the start with all the uncertainty as to where it may go - I definitely had that - but for most people it does settle down.

As for dosage, I recently read an interview (which Sandy has put on the site) with one of our leading CML experts in the UK which suggested that there was a view amongst the experts that the starting dose should have been approved at higher than 400mg, so 600mg isn't necessarily a  "high" dose.  Obviously people differ in how they process medicines so it's possible you are processing it very efficiently and getting a high amount in the blood, which is good for dealing with the CML but maybe increases side effects and tolerance issues.  That I think is possible.  They can measure that and adjust your dose if necessary.  But at  the start they likely want to get all the counts under control, which may mean a bit of adjustment to begin with to achieve that and then hopefully like most people it will settle down. 

Good luck and have confidence.

Richard

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