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User Reviews for Ibrutinib

Also known as: Imbruvica

The following information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

Condition Avg. Rating Reviews Compare
Waldenström Macroglobulinemia 8.0
1 reviews 1 medications
Graft-versus-host disease 7.5
2 reviews 13 medications
Chronic Lymphocytic Leukemia 6.3
29 reviews 21 medications
Mantle Cell Lymphoma 5.5
3 reviews 10 medications
Summary of Ibrutinib reviews 6.4 35 reviews

Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.

Reviews for Ibrutinib

Ck February 4, 2020

Imbruvica (ibrutinib) for Mantle Cell Lymphoma: “My 78 year old mom was prescribed Imbruvica 420 mg 1x per day in Jan 2020. She’s in the hospital with a-fib, dizziness, blurred vision, skin lesions, pneumonia, upper resp infection, etc. After reading the insert that comes with it, I checked off the side effects 1 by 1 & couldn’t believe it. I pointed out the effects from the info insert AND the testimony via this page and said to immediately take her off. She’s went into uncontrollable a-fib two nights ago and is literally fighting for her life. They will drain fluid from her again. I don’t think that we should have to be the professional and solve the problems. I’m so disappointed with her oncologist and have no answers as to how and if this will get turned around. It’s so heartbreaking that the patient is led to believe this is the fix all drug. We were told it’s 69% effective. So glad it works for some people but so disgusted that it’s taking people’s’ lives and leaving my mother in this condition.”

1 / 10
SoBe · Taken for 6 months to 1 year January 3, 2020

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “My husband was on Imbruvica for CLL. He was living a very full active life. He had no risk factors for a cardiac event. He died suddenly of cardiac arrest. Was it Ibrutinib that caused sudden death? I will never know but that is what I suspect.”

1 / 10
Drew · Taken for 1 to 6 months November 17, 2019

Imbruvica (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 sepsis. I stayed out of ICU. Went on antibiotics, cleared up the Infection, and was started again on Imbruvica at 280 mg. I have went 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, Rituan, and Newlasta. I was allergic to all three, had 7 hospitalizations and almost died. I was in remission for 39 months before this spring CLL ugly head appeared in my life again.”

10 / 10
Heartbroken October 21, 2019

Imbruvica (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 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 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. Cardiologist was perplexed.”

JoeP · Taken for 1 to 2 years October 14, 2019

For Chronic Lymphocytic Leukemia: “Back in 2017 my doctor started me on (1) Ibrutinib pill per day for (1) month to see as to how I would tolerate the medication. Then he increased to (2) pills per day as there were no side effect and after one month, checking my blood, he wanted to go full scale and we started with infusions of some medication once a week in addition to the (2) Ibrutinib pills . This went on for several months till the results of the white cells was good. Then we went with the infusions once a month for (6) months while still taking the (2) Ibrutinib pills every day. After that we continued the (2) Ibrutinin pills per day up to now, Oct,2019. My condition was caused by AGENT ORANGE, a defoliant, in Vietnam. I am under care of the VA (Veterans administration) and the care is just wonderful. Oh, the CLL was attacking my KIDNEY and the VA doctor stabilized it. NO SIDE EFFECTS WHAT SO EVER from the beginning to present.”

10 / 10
LC · Taken for 2 to 5 years July 2, 2019

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “CLL came back after almost 3 years being cancer free. Now I was put on Imbruvica. It fluctuates between 11,000 & 14,000 plus per month. It’s said to be a miracle drug. I take 3 capsules per day everyday for the rest of my life. All my numbers are better than the best my oncologist says. However no one mentions my weight loss. I’ve lost 40 lbs. I think the dosage needs to be adjusted as I believe it’s just too much for my size. Anyone else have the same experience?”

Fhertel1 · Taken for 1 to 2 years May 26, 2019

Imbruvica (ibrutinib) for Waldenström Macroglobulinemia: “Initially, Imbruvica caused rather severe fatigue in first two months after which it gradually improved. 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 count 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. Manufacturer provides a $30 supplement, a pittance considering monthly cost of $11,000.”

8 / 10
T · Taken for 1 to 6 months April 25, 2019

For Chronic Lymphocytic Leukemia: “My dad was diagnosed with chronic lymphocytic leukemia (CLL) 6 years ago. 2 month ago switched from chemotherapy to target therapy (ibrutinib). His blood tests like hemoglobin and platelet got better over time and he was happy. But his heart condition got worse over time and 15 days ago he suddenly passed away of heart attack. I guess heart attacks and heart problems is a repetitive theme in patients who consume ibrutinib and CLL My beloved dad :(”

1 / 10
Jerome Eastwood · Taken for 1 to 2 years April 20, 2019

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “12/7/17, I was taking 3 (140mg) a day. The first 2 weeks it dropped me down (drained/ no desire to eat). After that, my body did a 180 degree change - 18 days in I was up walking freely and could taste food. I was 51 at that time, my Doctor told me that I may be on this for the rest of my life. Now here in March 2018, 1 pill a day (420mg). I truly grateful for my oncologist. I pray for us all.”

9 / 10
Bobbie March 16, 2019

For Chronic Lymphocytic Leukemia: “Been on Ibrutinib for over 2 years. My lab work is normal after starting with a hemoglobin of 4.2 and all lymph nodes involved. One year prior to diagnosis, all lab work was normal. Have had none of the expected side effects, but have had A fib , cracked nails, infected nails, continued tiredness and short on stamina. Have had one severe leg cramp, but I'm not sure that's related. Could be I've already lived longer than I thought I would and am so grateful for Ibrutinib. If any researchers are reading....Thank you.”

9 / 10
BB January 3, 2019

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “My mother has been given thus medicine and when the her dose increased it shut down her internal organs she nearly died. She now gets blood transfusions.”

1 / 10
GGL · Taken for 1 to 6 months December 7, 2018

Imbruvica (ibrutinib) for Graft-versus-host disease: “Started Ibrutinib (Imbruvica) on 22/10/2018 (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 front line treatment (Mycrophenolate & predinsoline - ave dose 20mg). Experienced quite severe diarrhoea 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). Immunoglobin levels have dropped will require an infusion. Some early signs that skin symptoms ie scleroderma might be reducing. However too early to tell effectiveness, suspect will be another 30-60 days before start to see if going to have impact”

7 / 10
Meghna · Taken for less than 1 month November 12, 2018

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “My father (68) is suffering from CLL since 2006. He has gone through several chemo sessions till now which has only deteriorated his health. Due to heavily pretreatment for his disease his health has only worsened. He gets admitted to hospital every 3 to 4 months for other ailments that happen due to the chemo sessions. His last chemo session happened in September 2018 which affected his brain heavily. Now doctor has again advised us to put him on Imbruvica (Ibrutinib). He has taken ibrutinib before for 6 to 8 months in year 2016-17 and all went well with him, except few common side affects. We discontinued with the medicine due to financial issues and again he was on chemo sessions. Now It's just third day of the dosage and he is suffering from headaches, vomiting, body chills and upset stomach. Our financial conditions don't allow to have this medicine now but this is the last hope for my father now.”

9 / 10
Nada · Taken for 1 to 6 months July 4, 2018

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “My dad has CLL. Started taking Imbruvica and a month later developed lesions on his brain, spleen, lungs, and adrenal glands. Lesions were initially thought to be cancerous. A biopsy proved that the lesions were actually a fungus called aspergillosis. This particular type that my dad has is invasive and very often fatal in patients with a compromised immune system. I should’ve done a better job at researching all of the side effects. My main concern was cardiac issues and I don’t recall seeing information about this drug causing fungi before my dad started it. The CLL was managed by chemo infusion pretty well in my opinion; now I feel like this new drug has caused WAY more issues for him and FAST!”

2 / 10
Grandmacon · Taken for 2 to 5 years April 24, 2018

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “My husband has been on Imbruvica since October 2015 and is now down to one pill a day. It is a miracle drug but I just found out today that they are changing from capsules to tablets and tripling the price. Shame on you, greedy Johnson and Johnson.”

10 / 10
Texmarc55 February 1, 2018

For Chronic Lymphocytic Leukemia: “Started treatment at VA in Houston about 6 weeks ago....lymph nodes back to normal in 1st 2-1/2 weeks. 5th week of treatment started feeling flu like worse over next 2 weeks. Visited with Hematologist a few days ago.....dropped from 3 pills daily to one pill daily. I bounced back in one day.....lots of energy and no more body aches/pain. Night and day difference in a very short time span.”

8 / 10
Asti Kitty January 25, 2018

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “I am a female going on 79 years old. I was first diagnosed with CLL in 2013, when my primary doctor noticed a rise in my WBC. I started seeing my present Oncologist in November of 2014. At one of my visits in 2015 he informed me that my WBC had reached 295,000. When I asked him if there was an alternative to chemo, that is when he put me on Imbruvica (3 pills a a day) -that was in August of 2015. I am still taking the same dosage of Imbruvica and my WBC is at 10,000. My visits to my doctor are now six months apart. No side affects.”

10 / 10
BingBang · Taken for 6 months to 1 year January 25, 2018

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “Wow...I'm seeing a theme here! My husband began Imbruvica for CLL in June 2017 and we were both telling everyone that it was a miracle drug. Then at 3:00 AM on 12/30/17, he went into sudden cardiac arrest without any warning. It is an absolute miracle that he survived at all and he still has a long recovery ahead. I think this needs to get more coverage based on the number of people who have suddenly died - or almost died!!”

2 / 10
Mfirmes January 9, 2018

Imbruvica (ibrutinib) for Graft-versus-host disease: “About me: AML, stem cell transplant survivor with GVHD. How Imbruvica helped: I started imbruvica in 4/17. Prior to taking it I was completely debilitated. After 4 full months on the drug I noted marked improvement. Now I am able to walk, light lifting, and carry out regular activity with much less fatigue and pain. My skin GVHD is not showing any symptoms. It's been a god send! Side effects: I noticed cramping at about 5 months and back & joint pain at 8 months. The cramping became severe however it is managed well with tonic water. The pain is extreme at times - but so far outweighs the GVHD symptoms.”

8 / 10
lesterohio · Taken for 1 to 2 years January 4, 2018

For Chronic Lymphocytic Leukemia: “I have been taking imbruvica for 1 year. WBC count went from 44,000 to 10,000. Took a year but feeling great with no severe side effects whatsoever. I take 3 each morning. Amazing so far.”

Had already done 4 chemo treat · Taken for 1 to 6 months December 6, 2017

For Mantle Cell Lymphoma: “My doctors are saying that it's a miracle; had tennis size ball nodes across chest and close to heart. Oncologist, amazing Dr put me on imbruvica in August ,now all tests ,including catscan don't show anything anymore even hardly the nodes ;yippie I'm happy wow I can't still believe that I hardly had any effects.”

Best friend’s husband November 16, 2017

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “He was doing so well on this treatment. But then he had a sudden cardiac arrest. It took 16 hours to get his heart to stabilize. He was shocked more than 20 times. He remains in the hospital three weeks later. His heart, brain, lungs are damaged. He cannot walk. He is a father of 2 teens and had just celebrated his 47th birthday.”

3 / 10
ShimonKnows · Taken for 1 to 2 years August 20, 2017

For Chronic Lymphocytic Leukemia: “Went thru Rituximab treatment first. Now taking for over the year.No side effects. My WC count dropped from 450,000 to 11.500. Feel very good”

10 / 10
Robertmcl · Taken for 1 to 2 years July 24, 2017

Imbruvica (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”

10 / 10
Poor Rudy July 7, 2017

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia: “My husband took 3 Imbruvica before bedtime and died the next day from Sudden Cardiac Arrest”

1 / 10