Nilotinib and Dry Skin: What Users Say

• CML...
• Taken for 1 to 6 months
• February 19, 2020

Nilotinib for Chronic Myelogenous Leukemia "Diagnosed with CML and a white count of over 750K (yes, you read that right). After 2 months, the white count fell to 5K (middle of the normal range). The two 'fasting windows' per day that are required are a hassle, but you get used to it. Light to moderate bone pain occasionally, but most days there is none. Slightly dry skin on and off, but not too bad. Insurance covers (UHC) with a STEEP co-pay (around $1300 per month!), but that makes me hit max out of pocket (MOOP) by March of every year, so in that respect, no more expensive than anything else since I'd hit MOOP anyway."

• Wil...
• Taken for 2 to 5 years
• October 16, 2016

For Chronic Myelogenous Leukemia "Been on an 800 mg daily dose of Tasigna since November of 2014. During my last visit with my hematologist, no significant trace of BCR-ABL was detected, so the stuff has worked extremely well. Side effects are minimal and tolerable: hair thinning, dry skin, cystic acne, recurring/intermittent eczema on the palms of hands -- controlled with Kenalog cream, recurring/intermittent allergic conjunctivitis, and itchy hay fever-like itchiness around and in the eyes, very infrequent headaches, mildly changed digestion, and frequent daytime tiredness. The cost of this drug is obscenely high. Glad to have help acquiring it."

• Anonymous
• Taken for 5 to 10 years
• September 16, 2020

For Chronic Myelogenous Leukemia "This is my second review of this drug. Started taking the medication on 11/14. It is now 9/20, so about 6 years. The medication has put me into CMR, or Complete Molecular Response, which means that the PCR test does not find the BCR-ABL gene in my blood. All symptoms have remained consistent: hair thinning, dry skin, cystic acne, intermittent eczema on the palms of my hands, intermittent allergic conjunctivitis, and itchy hay fever-like itchiness around and in my eyes, very infrequent headaches, mildly changed digestion, and frequent daytime tiredness. The most troubling side effect is leg pain that can be pretty bad when I work out really hard. Rx pain meds help with that. All in all, very thankful for this medication, it has literally saved my life."