Ibrutinib and Diarrhea: What Users Say

• Dre...
• Taken for 1 to 6 months
• November 17, 2019

Ibrutinib for Chronic Lymphocytic Leukemia "I started Imbruvica in August 2019. I had to stop after only one dose due to an ER visit showing an infection. I was taking 420 mg. Started back on Imbruvica again, lasted 7 doses, then another infection, this time a UTI that made me septic. I stayed out of ICU. Went on antibiotics, cleared up the infection, and was started again on Imbruvica at 280 mg. I have been 28 days. I have nausea, some diarrhea, and pain in my lower right quadrant, and both sides of my lower back. I have medication to help with the nausea and diarrhea. This medicine is my best chance to get my CLL back into remission. I was on Bendamustine, Rituxan, and Neulasta. I was allergic to all three, had 7 hospitalizations, and almost died. I was in remission for 39 months before this spring CLL's ugly head appeared in my life again."

• ste...
• Taken for 1 to 6 months
• October 30, 2016

Ibrutinib for Chronic Lymphocytic Leukemia "My 87-year-old mother took 3 pills in the morning. It lowered her white blood count from 125,000 to 14. 10 is normal. That's the only good thing I can say about this medication. She had such severe diarrhea and vomiting that she could not keep any kind of nutrition or food in her system. The drug almost killed her. Her doctor took her off the medication for two weeks, then had her start taking it again at a lower dose. Once again, as soon as she started taking the medication again, the side effects came back, and the doctor decided not to continue with the medication. Since her last appointment with her oncologist, her white blood cell count is now 50. Next doctor appointment, they're going to try an older, less effective drug."

• 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."

• Rob...
• Taken for 1 to 2 years
• July 24, 2017

Ibrutinib for Mantle Cell Lymphoma "For the first few months, I experienced some diarrhea. Then this condition subsided. For about a year, I experienced tingling in my hands and feet. Now, after about 15 months, this feeling is almost gone. Lymphoma had been found in my small intestine. After 15 months of Imbruvica use, I have gained weight to a healthy level."

• 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."

• Muk...
• October 2, 2020

Ibrutinib for Chronic Lymphocytic Leukemia "I've been on Imbruvica for only 6 weeks. Because of bad side effects, my doctor stopped the medication. Since I started taking the medication in October 2019 and now is October 2020, I still have the diarrhea. I tried all medications and some teas to stop it. Really don't know what to do."

• 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."

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

Ibrutinib 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."

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

Ibrutinib 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."

• 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."