Nilotinib and Insomnia: What Users Say

• Ian...
• Taken for less than 1 month
• November 30, 2016

Nilotinib for Chronic Myelogenous Leukemia "Started Tasigna on Thursday morning. I'm diabetic and became severely hypoglycemic on Saturday. Stopped taking diabetes meds, and that improved, but I had a stomach ache and nausea so bad I was dry heaving for 3 solid days because I couldn't eat. Went 3 days without sleep because I was curled up around the toilet. I stopped taking it on Monday evening. My reaction to this drug felt like what I envision chemo to be. I go back to my doctor tomorrow to come up with an alternative treatment plan. I'm now scared to start another med for fear of similar reactions, and I don't want to imagine being this sick the rest of my life. Very happy and envious of all the success stories."

• 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..."

• 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."

• Jj ...
• February 12, 2017

Nilotinib for Chronic Myelogenous Leukemia "Took Tasigna 2 tabs in the morning and 2 tabs in the evening. She's having too many little poops, which made her sleepless. She feels bloated most of the time. She barely sleeps. Was diagnosed with CML last Jan 2017. Before that, it is important to recognize such symptoms. She is 68 years old, in good health, eating a healthy lifestyle, taking high blood pressure medicines since late her 40s. Does her annual check-up at age 55 up to present religiously. No history of family CML except for hepatitis B in her sister. She started having WBC high of Feb 2016 from normal 10,000, went to 35,000. Doctors thought it's just an infection, took 1-3 antibiotics in between, starting in August with onset fatigue, hard breathing, and hypoglycemia, which she never had sugar problems before."