Nilotinib and Pain: What Users Say

• ase...
• May 20, 2009

Nilotinib for Chronic Myelogenous Leukemia "I used this medicine for 3 months, after 6 years of using Gleevec/Glivec. Though it was effective at 3 months, it improved RBC and WBC, reduced pain side effects at rest in comparison with Glivec, I was further restricted in activity than with Glivec. I developed shortness of breath, an extra heartbeat, which turned into an ischemic problem at mid LAD."

• Anonymous
• May 13, 2011

Nilotinib for Chronic Myelogenous Leukemia "2 years on Gleevec with minimal positive effect and maximum side effects. 3 months on Tasigna and swelling gone, leg pain gone, nausea gone, I feel good. Tests show much improvement and my doctor is now very optimistic. Twice a day regime and eating times are small problems. My libido is back."

• 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."

• 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."

• 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."