Nilotinib and Bone Pain: What Users Say

• Bob...
• Taken for 1 to 2 years
• November 9, 2019

Nilotinib for Chronic Myelogenous Leukemia "After a year on Sprycel, it wasn't working, so they switched me over to Tasigna. It brought my bcr/abl levels down more in 3 months than the whole year on the Sprycel. However, the 800 mg/day was too much for me, and I was neutropenic for several months and needed Neupogen injections, which was not fun. I've been able to tolerate the 600 mg dosage without any major issues beyond the standard fatigue and bone pain. Unfortunately, I've yet to reach a major molecular response, but hopefully that will happen in the next few months."

• 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."

• CML...
• Taken for 1 to 6 months
• February 19, 2020

Nilotinib for Chronic Myelogenous Leukemia "Diagnosed with CML and a white count of over 750K (yes, you read that right). After 2 months, the white count fell to 5K (middle of the normal range). The two 'fasting windows' per day that are required are a hassle, but you get used to it. Light to moderate bone pain occasionally, but most days there is none. Slightly dry skin on and off, but not too bad. Insurance covers (UHC) with a STEEP co-pay (around $1300 per month!), but that makes me hit max out of pocket (MOOP) by March of every year, so in that respect, no more expensive than anything else since I'd hit MOOP anyway."