Ibrutinib for Waldenström Macroglobulinemia User Reviews

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

Ibrutinib "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."

• Log...
• October 12, 2020

Ibrutinib "My husband has non-Hodgkin's lymphoma and Waldenstrom macroglobulinemia, he had been treated with chemotherapy in the past. He was leading a very normal and active life, then, last year in June 2019, he needed to be started on ibrutinib. After the fifth month of treatment, on the 30th of November 2019, he suffered a cardiac arrest at home. It was the most terrifying thing I have ever witnessed, I had to perform CPR until the ambulance arrived! He was in the hospital for six months, he is home now, and I am his carer, as he suffered a hypoxic brain injury as a definite result of ibrutinib! The consultants in ICU said it was a direct result of being on ibrutinib, it is also written on my husband's discharge letter from the hospital. I totally blame ibrutinib, and now our lives will never be the same."

• Bro...
• Taken for 1 to 6 months
• June 9, 2023

Ibrutinib "My father was diagnosed with stage 1 Waldenstrom macroglobulinemia in March 2021. He underwent chemotherapy, and in January 2022, he was doing so well that they switched him to Imbruvica. By May 16, 2022, he was rushed via ambulance to the hospital and admitted to ICU on June 5, 2022. Sadly, he passed away. I believe with all my heart this medication killed him within 4-5 months of taking it. They NEED to take this medication off the market. People are losing their loved ones quicker because of this medicine."

• Anonymous
• Taken for 1 to 2 years
• September 24, 2021

"I was diagnosed with Waldenström macroglobulinemia (WM), and in 2009, attempted treatments by Rituxan infusion, as well as several types of medication, all had been of no avail. Using the old drug, Leukeran, made improvements, however, with diminishing efficacy. I have had Imbruvica for about two years, with dosages first at 420 mg, then reduced to 280 mg. My IgM level dropped, and RBC count and HGB level both increased quickly in a few months. To date, IgM at 1000 and RBC and HGB in normal range (though on the high side), as well as platelet and ANC (on the low side). Side effects are bruising, high blood pressure, and indication of atrial fibrillation. Currently seeking a cardiologist's determination."

• JjR...
• Taken for 2 to 5 years
• September 24, 2023

Ibrutinib "I'm very pleased with the drug, but it would be prohibitive if I were on Medicare Part D. I'm not positive if my side effects of pain, fatigue, and diarrhea are caused by this or other health issues..."