Peripheral neuropathy is when there is pain and numbness or tingling felt at the extremities of the body especially hands and feet and is often associated with those who have already been diagnosed as diabetic.In my situation having been on imatinib for over 13 years and also having suffered considerable musculo -skeletal side effects assumed to be drug induced my oncologist referred me to a neurologist to investigate if I was suffering from myositis (inflammation of the muscles) as my CK score (creatine kinase) has been persistently above the normal range for this particular blood test.After another set of blood screens and also nerve conduction studies the conclusion from the neurologist was that I am suffering from the beginnings of peripheral neuropathy whereby the knee reflexes are minimal and the nerve endings in the peripheral body regions are becoming mildly damaged.I am not diabetic fortunately.
For the time being myositis has been ruled out but my recent set of blood tests for my oncologist showed a CK score of 1445 whereas the normal range is 38-190 so I have been referred back to the neurologist especially as such high CK scores might impact on heart muscles and brain function.
My physiotherapist tells me that both myositis and peripheral neuropathy are very difficult to treat and the only option is high hydration and water intake and daily stretching and strengthening.
I have found two articles in the medical literature both based on single patient histories and where interferon alpha preceded the use of imatinib used over a long term basis.The conclusion was that although nilotinib has higher vascular potential issues it relieved the symptoms of neuropathy previously experienced.Other studies showed that where there had been a prior experience of auto immune diseases such as muscle inflammation there was a higher risk than normal of pleural effusions arising when switching to dasatinib therapy .
My oncologist indicated to me that there probably was an association between neuropathy and imatinib usage especially if used on a long term basis and with older age as well but generally such an association is quite rare.
Has anyone had any experience of such issues and had to switch to another tki or had to consider it?
In my case we would be reluctant to switch because after the last two years on high dose 600 mg imatinib and now back on a regular 400 mg dose we are still virtually undetectable on the PCR test.
Any comments would be welcomed.