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Hi everyone.  My Father In-Law (74 years old) was recently diagnosed with CML and we are trying to find out everything we can.  For the past four months he's been on Sprycel and is now starting to experience widespread pain, e.g., hands, shoulder, neck, groin, feeling that it's pain in the joint/bone.  When he first started taking it, he had nausea every day and then last week the nausea disappeared and the pain came on suddenly. 

 

Has anyone heard of this being a side effect?  Also wondered if anyone has taken this or any other drug, then reduced the dosage or stopped it?

Thanks in advance!
C

Hi there,

Some patients do find dasatinib / Sprycel is hard on their joints. Of course, as we all get older I suppose joint problems are more frequent! However, it this has onset suddenly and is very painful for your father in-law then it's worth him discussing with his doctor about investigating further.

For example, I had lots of very bad bone pain on imatinib. My doctor wasn't that convinced it was caused by imatinib, but wanted to rule it out. We worked out that if you stop taking imatinib the vast majority of it would be out of your system in about 6 days. So I was to stop taking imatinib and if I felt better in a week or so, then that would prove it was the case. Like magic, all my pains went away on the 6th day! So we changed me to dasatinib which agrees with me better. Maybe this is an approach your father in-law could take with discussion with his doctor?

David.

Thank you so much David!  A few additional questions if you have time.

 

How long after starting imatinib did you start experiencing pain?

Was the onset of pain sudden?

Did the pain move around or spread?

Could you manage your daily activity with this pain?

Were you able to take anything to manage the pain?

 

Thanks!

 

 

 

 

The pain onset pretty quickly, within a week of taking it I remember. It was pretty sudden. For me, it was focused on my legs and arms - particularly the upper half of my legs. It totally nailed me, walking more than 50m was a real challenge so it really had an impact on my daily life.

I took a load of codeine for it, which dulled it but did not eliminate it. I didn't really like that - lots of codeine sort of numbs the mind! I was very pleased when after withdrawing imatinib the pain went away - a massive relief.

David.

Very helpful.  Thanks again for your insight!