Imbruvica side effects: Does any one have... - CLL Support

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Imbruvica side effects

KC10 profile image
KC10
19 Replies

Does any one have trouble with cuts on thumbs and finger tips while on Imbruvica

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KC10 profile image
KC10
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19 Replies
terryI_uk profile image
terryI_uk

I did and very dry, cracking skin on my hands. I used lots of E46 cream and cotton gloves. Very messy but it did help. No longer on imbruvica. Terry

PaulaS profile image
PaulaSVolunteer

Yes, I did. It started shortly after starting Ibrutinib. It was horrible... I'd never had such a thing before. My nails were cracking too.

I used gallons of skin moisturiser on my hands, which helped a bit. Then thanks to suggestions on this forum, I started taking Biotin capsules - 5000 microgram per day. My haematologist said it was OK.

The Biotin made all the difference, and several years later I'm still taking it (as I'm still on Ibrutinib). I tried stopping it once, but soon my fingers got bad again.

My finger tips still aren't as strong as they used to be. I have problems getting tablets out of blister packs - especially Ibrutinib which comes in the most horribly stiff strong blister packs.

Best to stop the Biotin for 5-6 days before having blood tests done though, as being on Biotin can upset the results of certain tests.

Paula

KC10 profile image
KC10 in reply toPaulaS

thanks!

clladytime profile image
clladytime in reply toPaulaS

I take 5000 biotin daily. What effect does it have on blood tests? I've never stopped prior to blood work or been told to.

SofiaDeo profile image
SofiaDeo in reply toclladytime

The biotin likely won't affect CBC and CMP, LDH, and others commonly used for monitoring our CLL. It can affect immunoassays like thyroid function tests, VitD, and some others:

labtestsonline.org/articles...

Note that this refers to "excess biotin in the blood". If your cells are sucking it up, preventing the fingertip cracking, you probably don't have a lot extra floating around. Consider holding it for, say, at least the "yearly" lab panel looking at thyroid function, Vit D levels, etc.

clladytime profile image
clladytime in reply toSofiaDeo

Thanks.

lankisterguy profile image
lankisterguyVolunteer

Hi KC10,

-

Each winter I would get splits from the corner of my nails that extended towards my finger tips. Very painful and difficult to treat. I also had psoriasis and treating that with photo therapy ( / narrow band UVB lightbox) has eliminated that also. -

Len

KC10 profile image
KC10 in reply tolankisterguy

thanks!

Jacksc06 profile image
Jacksc06

Hi. I had this issue when i started taking IB. I take Biotin daily and found that drinking lots of water helps, Best wishes.

KC10 profile image
KC10

thanks!

BSMI profile image
BSMI

Absolutely! For years now. And it can be very painful, so I usually have 1 or 2 bandaids on to cushion fingertips when they bump against things. I guess as possible Ibrutinib side effects go it’s one of the best, but very annoying.

I’ve noted the other replies here about Biotin, so might give that a try.

mrsjsmith profile image
mrsjsmith in reply toBSMI

Biotin helps with nails but for several years I use Hexomedine. My local pharmacy is run by a French woman but this is also available on Amazon. It clears up splitting very quickly. It’s an antibiotic liquid. My French hairdresser also uses it.

Colette

stevesmith1964 profile image
stevesmith1964

Yep and lots of cuts etc. Moved to acalabrutinib and the stopped.

morepork profile image
morepork

Yes, particularly my thumbs - both have splits vertically from above the thumbnails and are covered with plasters to ease the pain when I press on things. Biotin capsules caused acute epigastric pain and vomiting so I can't take those. My nails break and spit also at times. My total proteins are abnormally low on blood test, don't know if that is relevant. On Ibrutinib some years now.

hhk50 profile image
hhk50

Yes, it's a very common side effect of the Ibrutinib. Like the others, I am taking Biotin which helps but does not totally relieve the cracks and bleeding. So, I also use a combination of Working Hands during the day and Liquid Gloves in a Bottle at night. Both are available on Amazon. Sometimes, when things get really bad, I will soak my fingertips in olive oil in the evenings. All of these remedies have been discussed by others on this forum in the past.

Cathrun profile image
Cathrun

My husband (on Imbruvica) has developed terrible eczema on his fingers over the last year, which started with little cracks on his fingertips. He has tried every cream and ointment, with limited to moderate relief but it always comes back. Hoping we can get an appointment with a dermatologist soon, I wonder if biotin would help, I have supplements that I used to take but caused severe abdominal pain.

Artist123 profile image
Artist123

Yes, both nail and skin breaks. I found that using a thin layer of super glue on nails when they break below the quick helped tremendously. Incredibly painful when they break that low!

Blackbelt5 profile image
Blackbelt5

I have at least 3 fingers /thumb on each hand with cuts by my nails

Reddg profile image
Reddg

Yes, I use hydrocortisone cream for a couple of days which clears it up quickly. You can buy it from a chemist

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