You are here

Effect of Nilotinib on liver

Categories:

Hi all ,

In our latest fibroscan , we are told that the liver fibrosis is progressing.

My wife is on Nilotinib 300 BD and is currently undetected for a year.

It’s been almost 3 years 8 months living with CML and we started with 100 mg dasatinib

Post few months , and skin rashes all
Over body and on scuba’s advice we tried 50
Mg in 2021 however due to pleural effusion we had to leave that drug last year despite being undetected on 50mg when we tried 20 mg and cml reappeared.

When we shifted to full dose of 300bd on Nilotinib we experienced liver enzymes values off and fibroscan highlighted mild grade 1/2 fibrosis

We took bilipsa and vit e dosage but in the scan today (?after 6 months ) the fibrosis is progressing

The doctor has suggested us to consult our hematologist and do a liver biopsy in the next week

Has anyone experienced similar issues with liver on Nilotinib. Like a lower dose of imatinib is there a lower dose to try for Nilotinib too .

Please guide .. 🙏

Thanks

I was on nilotinib 800mg for 9 years, the only concern started in the last 2 years when my quarterly check ups were fine, apart from my liver readings that were flagging up, this lead to a liver biopsy in May this year they thankfully showed no damage was the result, but within 4 weeks I was put on asciminib 80mg. I’m not medically qualified to question what side effects these chemotherapy equivalent drugs can do to our organs but my liver reading have stabilised, if not improved since coming off nilotinib

Thank you so much for your reply . I wish the readings remain stable forever.

We are thinking of taking a break from the drug for a while and give sometime for the liver to recover as our readings are significantly high.

Not sure what the best route is and hence seeking help on this always helpful forum

Is there about one else who has been taking nilotinib and faced issues with liver.

If so what did your doctor advise . Did anyone lower the dose of medicine or changed the medicine or stopped it for a while

I am on 600mg Nilotinib. I had to vary my dose recently to stretch it out as I switched insurance carriers. My numbers did not change much so I think I will be trying 300mg in the morning and 150mg in the evening to see if everything holds. This will help me squirrel quite a bit of Nilotinib away for an emergency/rainy day situation. Just a thought as long as your numbers do not change much. .004 to .007 was mine while trying this method. We shall see at my next check up.

When I was treating with my first doctor, I was on 400mg BID Nilotinib for about a year
and my liver enzymes showing right above the upper limit and also the Billirubin level which gave me a mild jaundice.

After I met with the second doctor (I changed the hospital), the doctor advised me to cut the dose down to 200mg BID.
And after that, all my liver enzymes and billirubin were getting back to the normal range and I felt significantly better.
My PCR result also hovers around the same spot:
400mg BID - 04 Jul 2023 - 0.00576% IS
200mg BID - 27 May 2024 - 0.00720% IS
Dose reduction started from 05 Mar 2024

So I think it’s a good idea to discuss about this with your doctor.
There’s also an interesting research about the reduced-dose Nilotinib efficiency:
https://ashpublications.org/blood/article/130/Supplement%201/318/114734/...

I’ll have my next PCR test by this November.

Good luck!