You are here

Nilonotib update


Due to major stomach problems and feeling very unwell, I asked to drop to 300mg once a day to help alleviate the problems eating.  That was still causing problems with diarrhoea if I took meds first thing then ate breakfast 2/3 hours after.  I’ve now found if I eat first thing then have meds no sooner than 3 hours after I still have minor stomach problems but no diarrhoea.

Consultant is concerned that this dose may not be effective.  I’m at a loss as how how can take 2 doses and not have the debilitating stomach issues.  I have now lost a further 3 kg (over 6 weeks) whilst on Nilonotib which is becoming very worrying as I am very lean so can only assume the loss has been predominately muscle tissue.

anyone else had similar problems and how did you resolve the issues?

Is Nilonotib safe to the take prior to bedtime?  



Hi Mick, I too was reduced this week to 300mg but was told to take 1x150mg twice daily instead of the two together. Consultant said it works better that way. She will see me in two months and check bcr abl then. Stomach problems have had me changed from two previous drugs, it took about four months for it to settle in Nilotinib. Hope this helps.


Thanks for the reply TJ

thats useful to know about the dosage.  My consultant offered no support or advice on how to alleviate the problems or how best to make the lower dose be as effective as it can be.



Do you feel equally ill after taking nilotinib at night, or is it worse when you take it in the morning? 


I never took my imatinib in the morning as it made me dizzy/ill, but when I took it before I went to sleep I would be ok. I just switched to nilotinib two weeks ago, have not felt any side effects yet. Anyway, this is my schedule:

6am, take 300mg nilotinib

7:30am at work, drink a small coffee (like 1½ deciliter), just water until lunch. Maybe a small coffee around 10am.

11-12am, eat lunch. Maybe a fruit/nuts around 3pm.

6pm, take 300mg nilotinib.

7-8pm, eat evening meal. As long as I take it easy during the night my stomach will be fine. Evening meal is high fat/protein.


I had some stomach issues on imatinib, but after I stopped eating breakfast it got better (but even then I would feel ill/dizzy if I took it in the morning). Just an example from a patient, I can't recommend anything as I am not a doctor. Hope you find a solution.

Hello Jens, thanks for the reply

i was initially taking meds first thing in the morning then eating breakfast 2/3 hours after. That was causing me to have diarrhoea for most of the day along with stomach discomfort and bloating. After 3 days I developed symptoms of acute pancreatitis (checked on nhs web page), struggled to eat anything much for 2/3 days after.  I had similar symptoms for the following 3 weeks. After I’d had another episode of pancreatitis (suspected) I decided to ask to have a single dose daily as there was no way I could tolerate the problems and weight loss for another month never mind the foreseeable future! 

I have found if eat first thing then have meds at least 3 hours after and don’t eat for at least 2 hours the diarrhoea has stopped and most of the stomach problems are now tolerable.  I still have similar side effects to when I was in imatininib but thankfully as yet the debilitating joint pain is not as bad.  My concern though is that this single dose may not be effective and if I do have to resume twice daily the only way I can fit another dose in is to take it prior to going to bed.  Not sure though if this can cause problems having the drug in your system whilst sleeping?


My doctor did not say anything about not taking nilotinib at night but I guess as always check with your doc. I took imatinib at night, my doctor said it was ok. Good that the joint pain is less than on imatinib. I would often get muscle cramps and numb hands/feet on imatinib, but it disappeared after switching to nilotinib.

I shan’t forget those cramps on imatinib!  My wife nearly wetting herself laughing at me prostrate on the floor and the lifeguards at the swimming pool running around like a scene from bay watch! 🤣

Hi Mick, how long did you say you were on Nilotinib now ? Would it be worth switching again? my consultant is going to swap me to Dasatanib if my levels rise on 150 twice daily . As you say it’s for life so it has to be comfortable for you .

Hello TJ

im now on 2nd month of Nilonotib and this is the 1st month of 300mg once daily.  This is my 4th TKI and Dasatinib was causing pulmonary hypertension so had to come off it.  I’m due to have blood tests early January to see how I’m responding.  I’m coping well with the current level of side effects and feeling much improved from the sorry state I was in on 300mg twice daily.