Ibrutinib & nail problems. Anyone else had thi... - CLL Support

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Ibrutinib & nail problems. Anyone else had this problem.

Benny12 profile image
32 Replies

I’ve been on Ibrutinib for over 3 years & my white count & lymphocytes have taken this long to slowly to reduce & now are 19.5 & 15.3 respectively.

Since taking Ibrutinib I have bruised very easily & the slightest touch or knock will cause a mark of some sort.

I have for some time experienced different types of nail problems whereas in the past my nails have always been strong & healthy.. They have now deteriorated quite a lot breaking low down & ridges & I notice from the side effects of Ibrutinib this is a common so I would be interested to hear from anyone who has experienced this how it has been resolved.

I have tried various things but until now I never thought to attribute it to Ibrutinib.

Thanks a lot

Benny

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32 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Benny12,

-

Unfortunately there have been many postings about the effects of Ibrutinib on nails and skin.

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If you look on this page (and every page after as you follow links) to find the box labeled "Related Posts" you should find past postings like:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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I had it while on Ibrutinib, but have far less problems on Calquence/Acalabrutinib.

-

Len

Benny12 profile image
Benny12 in reply to lankisterguy

Thanks a lot Len. I will have a look. X

Zia2 profile image
Zia2

I also bruised terribly and had nails split. Seems common as Len writes. Hope yours improves with time !

Benny12 profile image
Benny12 in reply to Zia2

Thanks. I’ve read all the reports now & I’m speaking to my consultant today so see what he has to say otherwise I shall try Biotin which I haven’t tried yet.

mrsjsmith profile image
mrsjsmith in reply to Benny12

Benny in case it wasn’t mentioned in what you read Biotin needs to be stopped a week before any blood tests because it can skew results.

Colette

Benny12 profile image
Benny12 in reply to mrsjsmith

Thanks Colette. Yes I did see that & will remember to stop it.

hhk50 profile image
hhk50 in reply to mrsjsmith

Thanks for the info, Colette. I had not heard about stopping Biotin before bloods but will be careful to do so in the future.

Jacksc06 profile image
Jacksc06

Hi Benny. I had the same issues, I take one Biotion 2500 tablet daily, this has resolved splitting nail and is also good for the hair. Best wishes.

Benny12 profile image
Benny12 in reply to Jacksc06

Thanks. I'll try that.

chillsome profile image
chillsome

Hi I had this with my nails too on Ibrutinib. I took Biotin (and still do) but obviously it takes many months to show an improvement. Have now been off Ibrutinib for nearly a year and nails are much stronger again although still a bit ridgey. Before , I barely had to touch something for my nails to split and break.

Benny12 profile image
Benny12 in reply to chillsome

That’s interesting. Thanks

dmmck profile image
dmmck

I have been on ibrutinib for four years and have the same problem with my nails. Biotin has helped some. I also use Barielle nail crème which seems to help make them less brittle.

Benny12 profile image
Benny12 in reply to dmmck

Thanks for that. I’ll look for that. I’ll try some of that cream

kitchengardener2 profile image
kitchengardener2

I take Acalabrutinib and some of my nails are dreadful with ridges and weakness. My toe nails look awful. Still it's a small price to pay to be as healthy as we can.

Benny12 profile image
Benny12

Yes it is & very minor but still annoying!

Snoopy234 profile image
Snoopy234

Hi Benny 12, I, too, used to have strong nails which would grow long without breaking, but once I started Imbruvica they started to break, even below the nail line and the skin around the nails and at my fingertips was constantly splitting, which was pretty painful. After looking at past replies on this post, I tried soaking my fingers in olive oil, but this didn't have much effect. After a while I started taking Biotin (5 mg per day) and applying a strengthening nail polish (which also helped to prevent the nails breaking on contact). After a few weeks my nail problem was almost resolved, with only an occasional break. Once a week I remove the nail polish for one day to let my nails breathe, then soak them in water, cut them and reapply the polish. Hope this works as well for you as it did for me. I also apply a "hand and nail" cream almost every night and wear gloves while I sleep. Good luck!

Benny12 profile image
Benny12 in reply to Snoopy234

Thanks. I’ll have a go at that.

Kmegood profile image
Kmegood

Hi BennyYour issue about your nails and bruising is like what I experience after 2 years on Ibrutinib.

My nails crack and grow irregularly. I found that if I use {Hard as nails} and apply a few times a week it helps the cracking. Lately my nail problems have improved the past month. As for bruising my hematologist makes no comments about it other than it is from the meds and having CLL. The bruises appear in various places and after a month or so they disappear and then re appear again. The bruises are frequent on my arms and stomach and chest but never on my face. Being on Ibrutinib has helped alot to make my CLL stable so I just learn to live with these side effects.

Benny12 profile image
Benny12 in reply to Kmegood

Thanks for that. Yes you just have to learn to live with these side effects but they are annoying! My haematologist doesn’t want to know either about bruising & speaking to one yesterday they didn’t know nail problems were a side effect of Ibrutinib!

Northland profile image
Northland

I have been on Ibrutinib for 28 months and have experienced the same issues with my nails. I developed toenail fungus on several toes on both feet. I am now applying Jublia on them. According to the pharmacist that fills my Ibrutinib script 70% of people on the medication develop toenail fungus.

Benny12 profile image
Benny12 in reply to Northland

That’s interesting. 70% is quite high. I have tried a fungal nail treatment but perhaps I need a stronger one. Various treatments have seemed to work in the past but then it comes back but in different forms.

Northland profile image
Northland in reply to Benny12

Jublia is a prescription med that is applied like nail polish. A nurse I consulted suggested it was the only effective treatment for nail fungus based on her observations of working in a nursing home.

It seems to be working well for me so far but I may also try laser therapy which is also supposed to be effective but takes 4 treatments over 2 months and costs $600 Canadian.

Benny12 profile image
Benny12 in reply to Northland

Thanks for the info. There seems to be a lot of treatments to try before finding an effective one

mrsjsmith profile image
mrsjsmith in reply to Benny12

The treatment I found to work was Terbinafine, and it was the only anti fungal not contra with Ibrutinib. Three years now and no recurrence, but it took some time until it grew out completely.

Colette

Benny12 profile image
Benny12 in reply to mrsjsmith

Thank you

ANA4 profile image
ANA4

Hi Benny. I have the same issues. I tried many things and finally got a good result with Mavala Ridge Filler once every couple of days and Mavala cuticle oil twice a day. It’s really good. Best wishes

Benny12 profile image
Benny12 in reply to ANA4

Thanks. There are so many different things to try. It’s a pity the same thing doesn’t work for everyone!

Gisygirl profile image
Gisygirl

I was on Imbrutinib from 2014-2021..and my fingernails were brittle...now I am on Venclaxta..and my nails grow like crazy!

Benny12 profile image
Benny12

Interesting. Thanks

Wroxham profile image
Wroxham

Hi Benny12

The horizontal ridges are caused by the starting of taking Ibrutinib. It stops the growth of the nail.

Once the Ibrutinib has passed through your body, usually after 5/6 hours the nail starts to grown again. Of course this is a daily occurrence. As explained by my Support nurse. Vertical ridges I have no idea, sorry.

I took Ibrutinib for nearly 4 years until the cll overcame it. That was 4 months ago. I am now on Ventoclax.

My nails are slowly improving with the exception of my right thumb nail which is split down the middle and is growing like that.

No idea what to do yet. I do use hard as nails

to help strengthen all the time.

Good luck and if you find a cure please post.

Best wishes

Sue

mrsjsmith profile image
mrsjsmith in reply to Wroxham

Sue,

How interesting the nail on my right thumb has recently developed a deep split as well. I assumed due to the effort in pushing the Ibrutinib out of the packaging ! I also have tried everything mentioned here but running out of options.

Help 🤔

Colette

wroxham-gb profile image
wroxham-gb in reply to mrsjsmith

Hi ColetteNow why didn't I think of that.

I'm going to ask. It's very strange that you've got the same thing, thumb and right hand.

At present as there's a ridge I just Emery board it and then apply hard as nails. At least it's smooth if still visible.

Hope you keeping well with everything else.

I'll come back to you if I find anything out. Ok.

Stay safe.

Suex

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