Nilotinib User Reviews & Ratings (Page 2)

• 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."

• Bre...
• Taken for 5 to 10 years
• September 7, 2023

Nilotinib for Chronic Myelogenous Leukemia "I started Tasigna in Nov. 2013. In June 2023, my doctor took me off due to blood vessels closing off. I had to have kidney stents in both kidneys in May 2021 due to 80% blockage. I get my kidneys checked every year and they were 60% blocked at my last check-up. The last 2 years, the ends of my big toes are very sore. I could live with the fatigue, hair loss, and muscle aches from Tasigna and even 9.5 years of going 3 hours without food 2 times per day to take the Tasigna, but the closing of the blood vessels is too much risk. I probably should have gotten off Tasigna 2 years ago. I just tried Sprycel and the tiredness and muscle aches are way more than before. I'm going to be starting Scemblix in a week and will see how that goes."

• Bal...
• Taken for 1 to 6 months
• March 30, 2021

Nilotinib for Chronic Myelogenous Leukemia "This is my third month of having Tasigna 600 mg/day, felt every symptom that is mentioned, but all gone. I feel nauseated from the last three days, and it is not going anywhere. Though I have felt it earlier, but it was gone. I will get a PCR test of BCR-ABL at the end of the third. Let's see, hopeful molecular response will be good."

• Mis...
• Taken for 2 to 5 years
• February 16, 2015

For Chronic Myelogenous Leukemia "I have been on Tasigna since August 2012. I hit remission pretty quick. As for the side effects, I am always very tired, I can't work a full day. As a result, I can only work part-time now. I have a full-body pinpoint red rash that won't go away and feel sick quite often. Other than that, the meds are great."

• 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."

• RLM...
• Taken for 5 to 10 years
• October 1, 2021

Nilotinib for Chronic Myelogenous Leukemia "I have been on Tasigna for several years after 1 year of Sprycel (fluid in lungs with Sprycel). Tasigna has kept me at 0.00 PCR test for many years. Hardest part is the food schedule, 12 hours apart, 2 hours after and 1 hour before food, 2x150 mg two times a day. I use a Sharpie to date the blister pack to help keep track of days. Small amount of muscle pain, but easy to bear."

• 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."

• 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."

• 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."

• Wal...
• Taken for 1 to 6 months
• February 3, 2017

For Chronic Myelogenous Leukemia "Was on Gleevec when I was first diagnosed with gastrointestinal stromal tumor cancer at 17, and for me the 800 mg was unbearable. Way too many side effects to handle, and being brand new to the question 'how do you tolerate the medicine?' I grew to dread Gleevec and went off Gleevec about 2 years and 7 long months later, and after a relapse of growths showed up, was put onto Tasigna. Though fairly new to it, I have had little side effects thus far and seem to tolerate 700 mg much easier on this medicine than Gleevec. Definitely a medicine that is changing how I'm able to define my quality of life living with stage 4 cancer. Hope all GIST patients are able to receive the benefits of Tasigna, or Gleevec if that works best for you and your cancer's xenon mutation."

• Gle...
• June 26, 2008

Nilotinib for Chronic Myelogenous Leukemia "After taking Gleevec, this medication is much easier on the stomach, however, the potential for heart problems and strict time schedule is of concern. Time will tell."

• san...
• Taken for 1 to 6 months
• March 30, 2013

Nilotinib for Chronic Myelogenous Leukemia "I have had a very positive experience with Tasigna. Very little side effects compared to the Gleevec. My body seems to tolerate it much better than the Gleevec."

• Anonymous
• Taken for 2 to 5 years
• July 25, 2012

Nilotinib for Chronic Myelogenous Leukemia "Some joint pain at the beginning and constipation at first, but no problems afterwards."

• ken...
• July 30, 2013

Nilotinib for Chronic Myelogenous Leukemia "Had a reaction, ended up in the hospital. Can't take it."

• BDa...
• Taken for 5 to 10 years
• January 23, 2021

Nilotinib for Chronic Myelogenous Leukemia "Easy to use. I take one capsule twice a day. I have no side effects from the drug. I’m fortunate to have VA benefits to pay for it, as the actual cost would make it prohibitively expensive for most."