Liver enzymes: I’ve been taking Ibrutinib for... - CLL Support

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Liver enzymes

BookLovah20 profile image
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I’ve been taking Ibrutinib for three years with wonderful results…however, my liver enzymes have been elevated consistently. I would appreciate any experience anyone else has had with these side effects.

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BookLovah20 profile image
BookLovah20
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AussieNeil profile image
AussieNeilPartnerAdministrator

It's good that you are taking a proactive approach, but when you say "elevated consistently", are they outside their reference ranges? If so, by how much? Has your specialist expressed any concerns?

Neil

Agfar profile image
Agfar

Hi. I am not on any treatment and I have elevated liver enzymes so from that I would think it may not be a side effect of your treatment. My haematologist asked my GP (I'm in the UK) to run some blood tests and an ultrasound. My liver fibrosis test confirmed I should be seen by a specialist in the liver field. I am now waiting for a hepatology appointment at the hospital but as yet I have no date for that. In the meantime my haematologist runs liver tests and tells me that they are no worse than 6 months ago when I last had tests done for him. I don't think I would notice anything if it were not for the haematologist so in one way it is good it has been noticed. Checking yours out with your general doctor could be a good plan.

CoBubby profile image
CoBubby

Are you referring to BUN, AST and ALT from your blood work? I started Ibrutinib (IB) in 2018, and all of these three changed drastically. The high range for BUN is 17, and I’ve been as high as 25. The high range for AST is 36 and I’ve been high as 71. The high range for ALT is 56 and I’ve been as high as 134. I’m rarely in the ‘normal’ range, but they bounce all over the place. I rarely ‘drink’, so know that alcohol is not the issue. I was always normal prior to IB. My oncologist hasn’t been overly concerned contributing it to IB, and I guess I’ll be changed to another protocol if that happens. IB has been great in controlling my CLL.

Kingfish6 profile image
Kingfish6

Sorry to hear. On ibrutinib since '18 & luckily liver enzymes fine. Did have 1 bout a few months ago but then ok after retest a couple weeks later. It just dawned on me that it could've been that I went off ibrutinib for 2 months then restarted

shmbak profile image
shmbak

My husband started ibrutinib because he'd suffered from nausea for months and doc figured he'd try treatment to see if that helped. White cell counts weren't that bad at the time (early 2018.) Liver numbers jumped right away, and got high enough that doc discontinued treatment after a few months. Liver numbers returned to normal once he was off the ibrutinib. It had knocked down his white cell counts so doc put him back on W&W until he was clearly in need of treatment. When that happened, doc gave him rituxan for 6 mos. and Venetoclax, but he wasn't able to get to "normal" dose for most people. (He has atypical response to a lot of meds.) He'll reach 2 years on a low dose of Venetoclax soon, and doc plans to take him off at that point. Hopefully the low dose for 2 years will be enough to keep his white counts down without it, but this is kind of a one-person experiment. At the time he started ibrutinib, liver problems were not an expected side-effect, but I guess there are other people who have the same response that he did.

The nausea improved, so maybe he'd had gastroparesis (which I only learned was a possible consequence of CLL on this site) rather than a bacterial overgrowth which we'd been assuming since he'd had antibiotics about a month before nausea began. Tried all sorts of things to address the nausea (endoscopy, colonoscopy, naturopathic food recommendations, off-label antibiotics for traveler's diarrhea, etc.) But it went away (for the most part) after his CLL treatment was successful.

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