Nilotinib and Rash: What Users Say

• 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."

• Sam...
• Taken for 2 to 5 years
• April 15, 2020

Nilotinib for Chronic Myelogenous Leukemia "Started Tasigna a little over 4 years ago. Have taken a 200 mg dose twice a day ever since. Brought me from 56% cancerous white blood cells to 2% in just a few months, molecular remission within about 1 year and has kept me there. Still suffer from insomnia, bone and muscle pain, but rashes went away after a couple of years. Neuropathy in feet and toes, but I worry that peripheral artery disease is occurring also... Even with breaks (1-2 weeks), I never feel any better, so the breaks are hardly worth taking. Novartis patient assistance program took care of me for the first year and the Medicaid ever since with nothing out of pocket, thank God. TASIGNA HAS KEPT ME ALIVE..."

• 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."

• mha...
• November 10, 2010

For Chronic Myelogenous Leukemia "Been on Nilotinib for 2 years now, started at diagnosis - cytogenetic remission in 90 days - never sick with this medicine but it did cause skin rash, chest pain, and PVCs in my heart rhythm, also zapped my energy. I started taking a full vitamin regimen and extra potassium and magnesium pills, and my energy came back quick and strong, also, PVCs went away. I do have some severe heartburn some nights, but a Zantac each night takes care of that. Very thankful for Nilotinib!"

• 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."

• MNO...
• May 15, 2014

For Chronic Myelogenous Leukemia "I was diagnosed in 2008 and was on Gleevec until 2013 when I lost control. On Tasigna, I have a full-body rash that gets worse with every dose. Tried reducing the dosage with no change. Even stopped taking it for ten days, and the rash was gone. However, once I started again, the rash is back. The eating schedule is a pain, though death is not the result I'm looking for, so it's worth the inconvenience. In Feb 2014, my cancer cells were 100%, taking Tasigna, it dropped to 0.7% by April 2014. Time will tell if this treatment continues to work. My main concern is Tasigna interacts with hundreds of meds. And being sick a lot, it's hard to find meds that don't."