Sore fingers.

[Tigger53]

I have been on Ibrutinib since June for my SLL. Have had various side effects that have come n gone have now got very sore finger tips. Anybody else experienced this? If so did it go quickly . Thanks. Bes5 wishes and good health to all in 2018

[starsafta]

Splits on fingertips are typical on Ibrutinib - and panful. I always got them in winter, now it's worse. And we have to make sure they don't get infected.

Greasy Bag Balm can help healing. When splits are bad, I slather up my fingers and put on cotton gloves to wear while sleeping.

I concoct a mixture of 1/3 C African Shea Butter, which has vitamins E & D, with 10-12 drops of Organic Oil of Oregano, which is antimicrobial. I mix them in small jars and have one in car, one in purse, one in kitchen. It, too, is greasy, so I don't use when touching phones, computers and art paper. The oregano oil also helps make the shea butter creamier.

If splits are big, my dermatologist recommended applying New Skin, which stings at first and then helps seal open wound. She also prescribed Mupirocin to help prevent infection.

During day, I sometimes put shea butter mixture on split and cover with bandaid to heal/protect it. A spot bandaid can help.

I recently had splits on both thumbs and index fingers. Painful. After days of shea butter/bandaids, the bandaids ripped skin off the tops of fingers when pulled off, and now I'm dealing with painful sores on knuckles. Can't win. Have turned to spot bandaids instead of waterproof plastic.

I assume you know about taking 5000mcg of Biotin every day to prevent nail splits, which tend to come later in the Ibrutinib journey. Those of us who had weak, tearing nails can now pass on that info to newbies to help prevent this side effect.

Stay strong!

[Tigger53 in reply to starsafta]

Thank you for the info, nope didn’t know about Biotin, will sort that after Xmas, as nails are terrible. Merry Christmas, take care

[fapumpkin in reply to Tigger53]

Maybe read this following link when considering the use of Biotin.

healthunlocked.com/cllsuppo...

[shazie in reply to fapumpkin]

Thank you for reminding everyone to be careful using biotin. It did affect my TSH test

[BeckyLUSA in reply to starsafta]

Yes, be careful with Biotin. My doctor is on the fence about it, he is letting me continue to take it for now. Evidently the jury is still out on it.

[starsafta in reply to BeckyLUSA]

The caution in the article referenced says that Biotin in the system can affect some blood tests in labs that use a particular approach used in some labs. It is not true in all labs. Not knowing whether my lab's assay was one that would affect the results, I stopped taking Biotin a week prior to my blood labs, which included thyroid analysis. There was no change in those levels.

To me, this is not an indication that taking reasonable levels of Biotin is harmful, particularly when it makes such a difference in the healing of Ibrutinib ravaged nails. The study referenced is a heads-up to take precautions prior to testing, not to stop taking Biotin.

Before starting Biotin, my nails were paper thin, splitting and tearing. If a hair caught on a nail while shampooing, it could rip halfway down to the nail bed. Very painful. I was constantly filing rough edges of my nails. and there was no nail protruding above the skin line. Not only were the tears painful, but my nails were suddenly useless for their normal tasks of picking up objects, prying labels off of fruit, etc.

Knowing that B vitamins are water soluble, and excess amounts are flushed from our system, I chose to take 2 1000mcg capsules twice a day, hoping this would allow more to stay in my system for longer. Within a month, my nails were stronger, smoother, shinier, and growing. I have found that 4000mcg a day is doing the trick.

Nails grow very slowly, so even after many months, the worst tear that was halfway through the nail has only recently reached the tip of the nail. There is still a dip, but I know that, as the nail continues to grow out, it will eventually be smooth again.

For as long as I take Ibrutinib, I will not give up my Biotin, except for the week leading up to blood tests. And by the way, both my oncologist and primary care physician are wholeheartedly on board with it.

I wish I'd known about Biotin prior to starting Ibrutinib.

[BeckyLUSA in reply to starsafta]

Yes, I am still taking it as well and it is making a difference! I think my doctor is s little more cautious because of the trial. The least little thing in any of your blood tests that falls out of the “protocal” requires that it be written up as an abnormality or something caused by the trial drugs. Several weeks ago, my potassium was too high! Had to drink fluids and get an iv to get it back down to normal. Two weeks ago, magnesium was just under the protocal limits, but within “normal” limits. Had to get s magnesium infusion that day! You get great care with trials, but sometimes it can be over the top due to protocal issues!!

[starsafta in reply to BeckyLUSA]

Yes, I remember the great care when in an Idelalisib trial. It was comforting and felt good to know I was helping to contribute to data and progress for our disease.

I had to convince them that they couldn't take away my Lypospheric Vitamin C, vitamin D, and a few other supplements.

On the other hand, I'm very grateful to be taking Ibrutinib as standard treatment, which is so much more flexible and easy. Trips for labs and consults now every 4 months, no scans and biopsies. Just my phone alarm sounding its musical tone at 9:30 every evening to remind me to take my 3 pills.

I wish you well on our journey.

[BeckyLUSA in reply to starsafta]

Thank you so much! And I also wish you well. Hopefully with the Venetoclax added to the mix in this trial, we will be getting that much closer to a cure!

[starsafta in reply to BeckyLUSA]

May it be so!

[RJR1 in reply to starsafta]

That's the worst side effect I've had.. keep Liquid Bandage all over the house and in cars. Apply good lotions all the time ( Eucerin or others abounding those with alcohol) grease up at night and sleep with latex gloves... drink lots of water... take biotin for chipping nails and use Hard as Nails ( yes guys you can do that )

[Barbshow]

My husband has been wearing cotton gloves to sleep. He applies aquaphor first. He thinks the gloves are helping. We joke that he looks like a mime or a Disney cartooon character. I think I ordered the gloves on Amazon. He's also taking biotin.

[Corkyrissa]

Hi tigger 53. My fingers are split after 4 months on imbruvica. I have been putting Vaseline on them about 2-3 times a day. Also, I soak my finger tips in olive oil for 3. -5 minutes 2 times a day. At night I use gloves after applying the Vaseline . The gloves are infused with aloe and make hands soft. So far this has worked for me. Nails won't grow. But I put a clear nail polish by sally Hansen called diamond. Makes nails stronger . I hope this works for you , I use to put lotion on after every time I washed my hands did this for 1 month was ok but fingers still got the cracks. The Vaseline is amazing. Also, make sure you use gloves when washing dishes and use medical gloves when preparing foods because the tiny cracks can get infected especially with chicken. Good luck to you . I really hope this works for you . 🙏🏻

[starsafta in reply to Corkyrissa]

And petroleum jelly doesn't stink as much as Bag Balm! So if it works, go for it.

[Tigger53]

Thankou all for your comments. Merry Christmas everyone

[lankisterguy Volunteer]

Hi Tigger53,

I agree with many of the moisturizing suggestions. My CLL has caused mild Psoriasis year around, but dry cold weather then causes fingertip splits that are painful. Any good skin moisturizer applied after washing, and frequently during the day helps; when severe, using cotton gloves and a heavy cream or Vaseline at night helps. Hand sanitizer with moisturizer instead of soap helps, since we need to keep our hands clean to avoid infections.

Ibrutinib made all the symptoms much worse, and made my nails rippled and fragile.

Len

[Hidden]

yes. sore fingers. SLL and ibrutinib since August

[LynnB1947]

Tigger53 ... 44 months on ibrutinib & I've had the sore finger tips (and toes, too). I've only had minor splits. It seems that it usually takes about a week for it to get better. Merry Christmas to you, too.

LynnB

PS. Diagnosed with SLL in 2013

[bkoffman CLL CURE Hero]

Painful split skin is common on ibrutinib. I find a low potency topical steroid helps if you are sure there is no secondary infection. Stay strong Brian CLLSociety.org