Morning all. Hope everyone is doing well!
Hi, been on glivec now for 21 years and I’ve had lots of side effects over the years , but I’m now experiencing prickly burning skin on my hands feet face , has anyone else experienced this?
I also get electric shocks throughout my body .
Kathy x
Hi Kathy, that’s amazing 21 years! I was just diagnosed in February 2025. Was on Imatinib (Gleevec) for 3 months then on Dasatinib (Sprycel) since. My BCR ABL was at 25% but I believe I am beyond <10% now, results this week I believe. I get a prickly burning in my scalp, doesn’t help when the sun is out. Hoping this dissipates after a while……..
Hopefully someone on the Forum can come back to you on your symptoms
Theresa
Sounds like this could be neuropathy, which I have had for 3 or 4 years now. Gabapentin helps with these symptoms as does further dose reduction if possible I've been on TKI's almost 9 years now - nilotinib for 3 1/2 years , then dasatinib for 5 1/2 year. One failed TFR attempt 5 years ago. PCR has been negative for 8 years except when I tried TFR. I am currently taking 20 mg dasatinib every other day
Hi Theresa I know Ive been extremely lucky that glivec has worked so well for me x
