Nilotinib and Hair Loss: What Users Say

• jud...
• Taken for 2 to 5 years
• April 21, 2013

Nilotinib for Chronic Myelogenous Leukemia "I was diagnosed with Chronic Myelogenous Leukemia in October of 2010. I was prescribed 600 units of Tasigna per day - 300 AM and 300 PM. I was in remission in 12 days - thank GOD. I am on Medicare and get help with my co-pay from PSI. I have mild nausea when I first take the pills, mild constipation, and some shortness of breath, but I also have COPD. I have been taking Tasigna for 2 1/2 years now and am just starting to notice my hair is thinning. I was told I have to take it for life. I thank GOD every day for this medicine and will gladly endure the minor side effects in exchange for a longer life."

• Jay...
• February 15, 2016

Nilotinib for Chronic Myelogenous Leukemia "After Gleevec quit working after five years and no remission, Tasigna has been a wonderful medicine. Thinning hair, a little hip pain, and some blisters/itching... but so much blessing to have achieved molecular remission in 4 mos. and continued for 3 yrs. now. Doc has reduced my dose from 600 to 400 mgs to see if rashes stop and pain subsides. Hopefully, won't have to go back up. The cost is insanity... good thing I get assistance or I wouldn't be here."

• Fat...
• Taken for 2 to 5 years
• October 24, 2014

For Chronic Myelogenous Leukemia "I've been diagnosed with CML in March of 2012. I've been on Tasigna ever since. The results were great, but a few side effects have been bothering me, such as hair loss, abrupt mood swings, depression, bone pain (especially my back), muscle pain, and blurred vision sometimes. The ones that are tiring me are my hair loss and the bone pain."

• Act...
• June 8, 2019

For Chronic Myelogenous Leukemia "I have been diagnosed with CML at the end of 2018 and have been on Tasigna for about 6 months now. I have a very active lifestyle. While the drug seems to be working medically, there are side effects, here's what I can say so far to help others: 1. The first two weeks were very rough, and I had all sorts of bad side effects (mostly pain), however, it all went away! 2. Rash. It is a common side effect. I had it too, but it went away about 2-3 months after taking the drug. Just be patient. 3. I got used to the regimen of not eating 2 hours before and 1 hour after, it is not that bad. I do 4 am and 4 pm. 4. I work full time and I still have a very active lifestyle, including hiking, gym, etc.! 5. Hair loss. This is the only recent side effect that is worrying me. Each time I wash or brush my hair, a lot comes out, and new is not growing back. It's been like that for at least 3 months now, and I found no remedy so far. If anyone has any experience with that, please share."

• yak...
• April 28, 2012

For Chronic Myelogenous Leukemia "Loss of hair. Restlessness, insomnia, chronic fatigue, diplopia, Bell's Palsy recurring, skin rashes and sores, depression, mood swings, vision blurred at times. The fatigue is the biggest problem right now. Had the summer from hell with diplopia and Bell's Palsy. The Bell's Palsy started on the left side, and when that calmed down, jumped over to the right. Months of pain, like someone drilling behind my ear and along the side of my face. My oncologist said it wasn't the nilotinib. I say it was a reaction between Purgodan and nilotinib, Purgodan being a pre-cleanser for colonoscopies. My blood work is fine, and my CML is under control. I did not tolerate Gleevec too well, so this was my next option."

• 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."

• Cla...
• Taken for 1 to 2 years
• November 24, 2024

For Chronic Myelogenous Leukemia "I have been taking Tasigna for 1.5 years, 2x300mg a day. There have been no significant side effects, I tolerate nilotinib very well. My hair has become thinner, but it's still okay. I have really good blood values and hope it stays that way."