Hello, I was diagnosed with, CML in March 2018. I didn't respond to Imatinib and was therefore started on Nilotinib 5 weeks ago. I am experiencing a terrible itch particularly on my scalp. I have taken certrizine which hasn't helped. I am now taking Fexofenadine 120mg . This doesn't appear to have any affect and I am feeling quite low in mood . Any suggestions?
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Side effects of nilotinib
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Hi there...I was diagnosed at about the same time and had a similar issue. Felt like tearing my hair out at times and it kept me awake at times in the night. I'm not sure if it was coincidence or not but I simply tried using a medicated shampoo (T-Gel) and it went almost instantly. I used it again every other day for a few days and haven't had any issues since.
I had some sore and itchy 'bumps' on my scalp as well which have also gone. It's possible that I had just started to tolerate the medicine and it wasn't the shampoo but may be worth a go. I noticed the bumps came and went in cycles.
Have been on Nilotinib since the end of May and many of the niggly skin issues (itches/isolated red spots/bumps on face) have cleared up and gone for a while now. I seem to have dry skin on my legs and have lost some leg hair on the outside of my legs instead, joy of joys. I think I will have to take up cycling! :)
Good luck!
Thank you so much for prompt reply. I have tried 2 shampoos but will give Tgel a go!
Had you been on Imatinib first or did you go straight on to Nilotinib? I had several side effects, including slight itch, with Nilotinib but they did subside eventually .
How is your disease response? I must admit I am feeling quite disappointed that I didn't achieve remission with Imatinib but I know this is NOT uncommon .
Hi - I've been on Nilotinib for nearly 27 months - started on 600 mg and had many, many side effects - one was itchy scalp caused by folliculitis, a common side effect of nilotinib. These were sore to the touch, but also itched. My dermatologist gave me a topical erythromycin to apply and it helped a little. Fast forward and I am on reduced dose of 150 mg today but still have a few of these pop up from time to time but they are not nearly as itchy as they were early on. I have found that some side effects get better with time, some get better with dose reduction if you are a candidate and your doc agrees, and some new ones pop up that weren't there at the beginning. Whenever a new suspected side effect appears, I don't know whether or not to go see my doc or just wait it out. More recently I tend to do the latter because I have already had too many unnecessary tests and procedures that were negative and therefore just side effects from nilotinib.
As Forrest Gump said - "it's a box of chocolates." TKI's are a lifesaver no doubt, but to call them targeted is overreaching.
I was diagnosed in August of this year but my head itching started before I was diagnosed. After I started on gleevac it stopped. Me personally thinks it was a symptom of the cancer. A dermatologists did give me a tropical solution to use and suggested tgel shampoo but he also thought it was a symptom of the cancer. It drove me crazy.