Ibrutinib and diarrhea

[Green202]

Hello,

I'm wondering if anyone taking Ibrutinib has experienced diarrhea. grateful for tips on how to deal with this problem.

[Sprietgemeente]

Green ! I suffered 5 weeks of terrible diarrhea on Ibrutinib. , Prescriptions did not work, but carob powder stopped it in 2 days for me. It can’t harm you, it costs very little ( health food shop or Amazon) it tastes better of chocolate.Give it a go. One or two teaspoons in hot water or milk. Good luck !

[SofiaDeo]

Diarrhea was so severe and prolonged for me I had to stop the medicine. Not sure where you are geographically so can't guess at your type of diet, but avoiding fats (especially fried) and increasing soluble fiber like in oatmeal helped me. Plus loperamide/Imodium. And if you continue to have multiple watery movements, you will need electrolyte replacement sooner rather than later.

[morepork]

YES for me - I think this has been discussed before on this site but, I had to cut down my Ibrutinib dosage to 2 caps = 280 mg because of the constant diarrhoea .Imodium (Loperamide) is still my necessary friend as even on this lower dose I have to be careful about foods & being near bathrooms. Re foods eg nothing with nitrites/nitrates bacon, ham etc plus eliminating some of the FODMAP foods

[chillsome]

Yes I did while on full doses of Ibrutinib and Venetoclax for two years, so I suppose I can't attribute it to one or the other drug in particular. I am afraid I did not find an easy solution and there were times it was worse than others. My consultant did not appear to recognise it as being directly caused by the drugs and did not reduce the doses. I am sorry this is not much help but it stopped very quickly after I came off the drugs.

[Blackbelt6]

Yes severe diarrhea, so I went from 3 capsules to two to one capsules and fortunately my numbers are doing okay. I take the pill at night 11:30pm and if I am up by 7am I am okay. The problem I have is when it hits it hits fast with no notice. When I have an doctor appointment (only place I go with Covid) I stop the pill two days before my appointment because my bowels go back to normal (no diarrhea) I can eat what ever I want with no problems. After my appointments I go back to taking my pill. Good luck because the diarrhea can be brutal,Gary

[Bridgewood]

I have been on Ibrutinib for almost 2 years. First started on 3 pills/day but the diarrhea was unmanageable. After a few months I was reduced to 2 pills per day and my numbers were still as good, however the diarrhea was still very bad. I called my Hematologist and he said I would likely have to go on a different medication but I didn’t want to do that as my numbers were still where they had been, and most of all I felt so good. I asked him if I could try reducing to 1 pill and he agreed and I have been on the 1 pill the last year and a half. My numbers are still good and I feel great. Maybe you could give that a try? Hope you’re able to solve your problem.

[Bridgewood]

I forgot the most important result of the pill reduction! I now “go” every 2nd or 3rd day which is the best part.

[Provence]

Hello Green202, I have posted two posts about Ibrutinib and diarrhoea some weeks ago. I had had diarrhoea for months whilst only on 1 tablet of Ibrutinib ( 140 mg ) per day. After my first post and the advice I received, I decided that I should first check out whether it was the Ibrutinib or something else that was causing the diarrhoea. I therefore had numerous tests done ( parasites, bacterial, fungal and viral infections, liver function, pancreas function). All of them came back negative. I then also stopped with the Ibrutinib for 8 days to see if it made a difference. I could do this with the agreement of my haematologist because my blood counts have been very good since taking Ibrutinib. The result was obvious, after 4 days the diarrhoea and bloating stopped. I then went back on the Ibrutinib and symptoms started up again. I saw my haematologist to discuss changing my medication to Acalabrutinib. He fully agreed and told me to continue with Ibrutinib for another two weeks whilst he was arranging this with the Social Security ( I live in France), and then just switch. As it happened, the diarrhoea stopped in this two week period and has not come back. I still have bloating in the evenings but feel okay in the mornings. I am watching it all, but now I can switch to Acalabrutinib the moment the diarrhoea starts up again.When the diarrhoea was bad it was linked to digestive discomfort in the stomach as well. I ate a diet that made those difficulties less severe. Little or no fats or raw food or dairy. I cooked an Ayurvedic recipe of long-cooked soupy rice and lentils and that seemed to soothe my digestion a lot.

I hope you can find what is right for you. All the best.

[dmmck]

I had diarrhea until I started taking my ibrutinib at bedtime. Nothing to eat 3 hours before taking it. This worked well for me.

[danimal7777]

Hi Green, After six months on ibrutinib, I started having repeated episodes of appetite loss, lower right abdomen pain, then fever and diarrhea, all of which lasted about a week. Then, it would subside for two to three weeks and start all over again.

The first time it happened, I was sent to the ER on the premise it was appendicitis. But scans proved it wasn't. After many months of that pattern and associated weight loss, my oncologist suspended the ibrutinib for a month, and the problem vanished. Then, I started taking acalabrutinib, which did not cause any of those symptoms, gratefully.

[BeckyLUSA]

I had severe diarrhea the whole time I was on full dosage Ibrutinib. Diet changes and Imodium did not touch this diarrhea. The only thing that helped me was using a drug called Colostyramine, a cholesterol drug that has constipation as a side effect. It worked well for me, it comes in a powdered form that you mix into water or juice so you can adjust the amount you take to stop the diarrhea but not get constipated. This was prescribed by my Gastroenterologist and approved by my CLL specialist to be used while still on my drug trial. I wanted to stay on the drug trial because it was effective against the CLL. After 3 yrs on the trial, they allowed me to drop dosage to 140mg and still remain in the trial. The Captivate trial is over now, but I am now on a “Static” trial which covers my Ibrutinib since I am doing well, with no symptoms but I did not reach MRD negative status. I was able to stop taking the Cholestyramine when I dropped to 140 mg. Good luck. Diarrhea can be a major deterrent to a good quality of life. BeckyL USA

[deesil]

I have been on Imbruvica for 3 or 4 years and fortunately have not had this problem The pharmacy used to send me a page every month with my medicine about things to do if you experienced diahhrea. I didn't keep it because I didn't have that problem but some of the things they recommended were eating rice and drinking Gatorade. I do drink Gatorade Zero everyday.

[Iupiter]

I was on Ibrutinib and Venetoclax for 15 moths up to 3 weeks ago. I would have short bouts of diarrhea every 2 or 3 weeks. Would last one or two days and go away. But it would always come back again. I simply decided to get use to it and accept it as part of my treatment, which was a clinical trial. My Dr said diarrhea was on the list of side effects and should be expected. He attributed it to the I. I learned that if I ate something when I took my pills the diarrhea was less, but never disappeared. After I stopped, just 3 weeks ago, I have had no more diarrhea. I talked to my Gastroenterologist about that once and he recommended I consume probiotics and eat lots of rice. I did both. I did notice that eating lots of rice was helpful. The probiotics I don't know if they had any effect. Good luck!

[Green202]

Thank you all for sharing your experiences. It is really appreciated.