Hello, my name is Izham. I am 21 years old. I’ve been diagnosed with CML in the middle of 2016. Now, I’m taking 400 mg of Nilotinib 2 times daily equivalent to 800 mg daily. After 3 years of taking the same dosage, I feel that my hair is thinning and so many hair loss happened during the past 9 months. I want to ask if this side effect is temporary or permanent. What can I do to solve my problem? Thank you.
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Nilotinib Side Effects
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First I think that 800mg daily is very high dose for Nilotinib. I'm not sure that I have heard of somebody taking that high of a dose. I am on on 600mg and can't wait when God willing I will be able to decrease dose. If you PCR results are under 0.1 I would seriously consider/demand that the dose be reduced. I have noticed that my eyebrows started thinning but this started when I was on Sprycel so it is probably a general side effect of TKI. In your case I would not be surprised if it is the high dose that is causing it. Hope your PCR is good otherwise and keep us posted.
Hi Izham I’ve been on 800mg per day for nearly 5 years and the only change I’ve noticed (thankfully) appearance wise iv noticed is thinning of eyebrows, but my wife has commented my hair has got darker, and even stranger gone a bit curly. As for dosage amount I think you might be surprised how many are on 800mg a day. Pete
Yes my PCR is below 0.1 now. I’ll talk to my doctor on reducing the dosage. Thanks for your response!