Nails splitting since ibutrinib : Anyone else... - CLL Support

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Nails splitting since ibutrinib

Jilltap profile image
13 Replies

Anyone else experiencing severe nail splitting and breakage since starting ibutrinib? Anyone have any suggestions to help? Thanks in advance.

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Jilltap profile image
Jilltap
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13 Replies
shazie profile image
shazie

Yes. It is been going on for a while. Many others have reported the same problem. I haven't been able to find any solution for it. If you live in US please do report this problem to FDA.

Jilltap profile image
Jilltap in reply toshazie

Will do

JRMcll profile image
JRMcll in reply toJilltap

I have this as well. I saw a CLL Society video in which Dr. Byrd from Ohio State recommended Biotin to counteract the nail splitting problem. I have not tried it yet.

KHuff profile image
KHuff in reply toJRMcll

My experience with Biotin in the past is that it helps a little, not a lot.

Berrytog profile image
Berrytog

I do not know anyone who has not got this problem when taking Ibrutinib. You should also be having sore cuticles to go with it. For the sore fingers use E45 cream or similar. Use Marigolds when putting your hands in water and at night thinner rubber gloves stuffed with cream in the finder holes. This will help with the brittle splitting nails but there are many products available from chemists to paint on your nails to stop splitting and strengthen them.

Nevertheless, a very small price to pay for the massive advantages of taking Ibrutinib and the privilege as there are so many suffering the side effects of Chemo that would give their right arms to be given it. If you had to pay for it you could buy a new house every year with the money.

cllgirl profile image
cllgirl

Yes, I have had this nail splitting problem since I began Ibrutinib 3 years ago. I did report it to my oncoloogist. My dermatologist prescribed a pure urethane varnish similar to clear nail polish, but it turned my nails black. I gave up and simply try to keep the nails clipped very short.

Yes, I've had the same problem ever since starting on ibrutinib 4-1/2 years ago. My normally straight hair got a little wavy about the same time.

Nail hardner helps, but when it gets persistent I switch to Superglue.

Jilltap profile image
Jilltap

Thanks everyone!

KHuff profile image
KHuff

Are you anemic as well? Anemia always causes my nails to break and split.

Jilltap profile image
Jilltap in reply toKHuff

Blood results will be in Tuesday. They tested for lots of things. Will let you know.

Graham2222 profile image
Graham2222

You can also try nail moisturiser and plastic skin - I use Boots'.

ThreeWs profile image
ThreeWs

Hi Jilltap,

I've been on Ibrutinib for 55 months now and the nail problem is the only universal side effect that gets everyone on Ibru.

I tried Biotin early on but concluded it did not work. I re-evaluated biotin based on favorable patient reports and decided to try again when I realized that biotin comes in a range of strengths that I was previously unaware of. I was taking 50mcg (Note: many drugs and supplements are measured in mg or milligrams. mcg = micrograms) I found out that one can buy biotin at the following strengths 100mcg, 500mcg, 1000mcg, 2500mcg, 5000mcg and 10000mcg. I am currently on 5000mcg and it is definitely helping. The recommended dose for people with biotin deficiency is somewhere around 300mcg daily so talk your dose level over with your doctor before using as biotin may interact with other medications. Generally biotin is safe and when taking it in our situation one needs a little patience for it to work. everydayhealth.com/drugs/bi...

WWW

Jilltap profile image
Jilltap

Thank you. Great information! I will talk it over with my doctor on Tuesday (if he wants to continue me on ibutrinib)

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