Ibrutinib and Fatigue: What Users Say

• Hea...
• October 21, 2019

Ibrutinib for Chronic Lymphocytic Leukemia "It did reduce the size of my dad's lymph nodes, so from that perspective, it was working. My dad was previously treated with chemo. Almost immediately, my dad had side effects: very bad fatigue, which was impacting his life and depressing him. He developed a cough, which was monitored to ensure no pneumonia. Recently, they put him on an inhaler, saying he developed asthma. He also could feel his heart pounding. He saw a cardiologist for this and had tests, but nothing came up. He would get marks and bruising. He started to get what my mom called chemo brain. We had been questioning if he should come off from the side effects but weren't sure of the alternatives, especially now that he received this drug. The doctor said side effects lessen the longer you are on it, so he decided to stick it out. He last saw the cardiologist two weeks ago. Last Sunday, he dropped dead and couldn't be resuscitated. The cardiologist was perplexed."

• Fhe...
• Taken for 1 to 2 years
• May 26, 2019

Ibrutinib for Waldenström Macroglobulinemia "Initially, Imbruvica caused rather severe fatigue in the first two months, after which it gradually improved. The most noticeable side effect is frequent diarrhea. I take 1 Imodium cap almost every day and 2 after very loose stool. Also, considerably raised blood pressure. Added 2 meds for this. I’m about 18 months after diagnosis, and basic blood work shows white, red, and platelet counts normal, but IgM protein level still elevated, but steadily decreasing. Usually feeling good, but still have unpredictable, but short episodes of fatigue requiring several hours of rest. The manufacturer provides a $30 supplement, a pittance considering the monthly cost of $11,000."

• GGL...
• Taken for 1 to 6 months
• December 7, 2018

Ibrutinib for Graft Versus Host Disease "Started Ibrutinib (Imbruvica) on 10/22/2018 (7 wks ago) for cGVHD (Chronic graft-versus-host disease) arising from stem cell transplantation (SCT) (matching female sibling) in 2014 to treat Mantle cell lymphoma (MCL). cGVHD (skin, eyes, mouth & subcutaneous tissue) resistant to frontline treatment (Mycophenolate & prednisone - ave dose 20mg). Experienced quite severe diarrhea after 2 days. Resolved after 5 weeks after taking loperamide, which is no longer required. Also experienced increased fatigue and maybe slightly more cramping (was already getting some cramps which is common for cGVHD). Immunoglobulin levels have dropped will require an infusion. Some early signs that skin symptoms, i.e., scleroderma, might be reducing. However, too early to tell effectiveness, suspect it will be another 30-60 days before starting to see if it will have an impact."

• Jin...
• Taken for 6 months to 1 year
• May 13, 2023

Ibrutinib for Chronic Lymphocytic Leukemia "I was diagnosed with CLL in 2013. Treated with Rituxan and Bendamustine. Went into remission but CLL returned in 2022. The oncologist prescribed Imbruvica 420 mg daily. My WBC level is now in the normal range. I suffer a great deal from rash and fatigue since my hemoglobin level and red blood cell count are below the normal range."

• Sus...
• Taken for 2 to 5 years
• October 26, 2024

"On ibrutinib (540 mg) for 3 1/2 years. Seems to be controlling my indolent MCL. However, side effects, which make the ibrutinib undesirable, include fatigue, increased osteoarthritis, and skin wrinkling. Easy to take."

• 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."

• Luk...
• Taken for 1 to 2 years
• October 18, 2024

Ibrutinib for Chronic Lymphocytic Leukemia "Mild swelling of lower legs at sock line. Purpura with both arms and hands. Mild fatigue. A greater need to rest at times."