I was diagnosed in April 2018 and commenced Imatinib. However, I didn't respond to it and was changed to Nilotinib in October. Having read other people's posts on this site, I seemed to have experienced many of the most common side effects. I had aching limbs, joint pain, fatigue and small red itchy areas on parts of my body. Most of these settled after approximately 12 weeks, although I do struggle with low stamina. These are nothing in comparison to the painful nerve like pains I have in my scalp. I can best describe it as though I am wearing a skull cap filled with "turbo charged" stinging nettles! It continues 24 hours a day and wakes me at night. I have an insatiable desire to scratch my head but this just makes it hurt, like a burning sensation. I have tried antihistamines, steroid lotions, simple shampoos (with NO additives, lanolin or other "nasties"), I use cool water to wash with and was even prescribed amitryptilline to help with the nerve ending type pain. None of these have helped at all.
My Haematologist and nurse specialist originally were quite dismissive until I threatened to stop the medication! They have no further suggestions and keep trying to reassure me that once I am in remission and my blood counts normalise and begin to regenerate in a healthier manner then I should have some relief. I think this is a cop out as, in fact, they don't know what else to suggest. My BCR-ABL was 60.37 in November reducing to 20 in February. I am awaiting an appointment any time soon and I am hoping that the downward trend is continuing. If possible I would appreciate any advice/suggestions that I could take to the consultant. It has been a very difficult year, particularly as I appear to be slow in responding to treatment, but this pain is sometimes too much to bear. My worst nightmare would be if I responded to the Nilotinib but my scalp pain/itch continues as my doctor will certainly not want to change things then.
