Ibrutinib and Mouth Sores: What Users Say

• Mik...
• Taken for 1 to 2 years
• February 12, 2021

Ibrutinib for Chronic Lymphocytic Leukemia "CLL had my WBC at 120,000, and liver, spleen, and nodes were beginning to swell. At 10 days on 420 mg, my count was 70,000, at 28 days, 40,000. WBC continued down over the next 10 months to 8,000. I had expected side effects over those 10 months: diarrhea, mouth sores, joint pain, etc. At the exact time my WBC reached normal levels, the drug became toxic with devastating urinary issues, as well as every side effect listed. Stopped the full dose for 3 weeks, WBC rose to 20,000. Started 280 mg with minimal and tolerable side effects. WBC now at 13,000 and falling. If toxicity returns, we will try 140 mg."

• Mik...
• Taken for 2 to 5 years
• August 2, 2021

Ibrutinib for Chronic Lymphocytic Leukemia "I've been on it a little over two years after relapsing from FCR in 2014, was in remission till May of 2019. I haven't had much in the way of side effects, mouth sores that can be controlled with mouthwash. My counts are all in the normal range, and waiting on the results of an MRI I had for another issue to see what my lymph nodes are looking like."

• SST...
• Taken for 5 to 10 years
• April 12, 2025

Ibrutinib for Chronic Lymphocytic Leukemia "Been using Imbruvica 5 years has brought white count down from 206.3 K/µl in 2021 to 8.0 K/µl in 2024 at 420 mg daily. Feel good overall. I did about 3 months of first taking the Rx, start getting mouth and skin sores, Purpura I was told, more of a blood blister to me. Was given 800 mg of an antiviral called Acyclovir, which helps. Still get a few, nothing as before. My CBC tests are within limits, with only one item slightly over max at 15.1% vs [11.>15%]. Feel pretty good, little tired, have other old age >70+ issues, sometimes hard to say what's the cause of my discomfort."

• CLL...
• Taken for 1 to 6 months
• July 23, 2014

For Chronic Lymphocytic Leukemia "Side effects for me: muscle spasms, mouth ulcers, diarrhea, fatigue, dizziness, itchy skin, sore throat, cramps, insomnia, sun sensitivity, and drowsiness."