Ibrutinib and Nerve Pain: What Users Say

• RWB...
• Taken for 2 to 5 years
• September 25, 2024

For Chronic Lymphocytic Leukemia "My 4th year on Imbruvica 280 mg, early on I had weakness, shortness of breath, musculoskeletal pain, diarrhea, but after the first year, these effects subsided. Now on my 4th year, I'm having some peripheral neuropathy and severe bruising and a slight increase of WBC. But all said, the drug is keeping my CLL in check."

• rcp...
• Taken for 2 to 5 years
• July 15, 2024

For Chronic Lymphocytic Leukemia "I took it when I was first diagnosed with CLL in 2014. It was the third medication I tried, and it worked very well for me 10 years ago. I was in remission from 2018 till 2023 when my CLL became active again. I tried various new meds that did not work well. Therefore, I asked my doctor to try Imbruvica again. I took it for 4 months, and it stabilized me. Then, I started having neuropathy all over my body, especially my feet and legs. It hurt to walk on my feet, and my legs felt very painful and heavy. My doctor took me off it again in May 2024. Then I began night sweats and felt very tired all the time. He put me back on it, and I broke out in boils. So I stopped taking it as of July 2024. I guess it no longer will work well for me. But in the beginning, it saved my life!"

• Del...
• Taken for 5 to 10 years
• June 23, 2023

For Chronic Lymphocytic Leukemia "On Imbruvica for almost 7 years. I had to do 2 cycles of RCHOP first, as Imbruvica was a second-line treatment. It was very effective at reducing my tumor load and keeping it away with 420 mg a day. I had side effects that were managed for most of the time. The neuropathy, diarrhea, heart palpitations, and lung damage were the most persistent. Fifteen months of bleeding from the lungs was the reason for stopping Imbruvica."