I have been taking imbruvica for four months for sll. First diagnosed in 2009. I feel much better and my wbc has gone down from 246,000 to 76,000. Dramatic change.
Side effects - if anyone has experienced sores and cuts on your fingers (cuticle mostly) and same on my toes. Healing time is very slow.
Thanx, Mac
Edited title to ensure helpful responses - Admin
There are many previous posts regarding sores on fingers and in mouth. For starters, you might see my reply about how I have managed mine, and then look for more.
I've been on just over 6 months. About 4 months in my finger tips started splitting. Made it painful to touch or pick up things .
I've tried to up my fluid intake but most effective is keeping hands well lubricated.
I apply Eucerin several times a day and about every other night I really grease up my hands and sleep with surgical gloves on.
A pharmacist in this group also suggested and reported using lotions containing 20% urea as very effective. I'll buy some of that soon.
When the skin splits it's easy to snag fabrics..trimming the dead skin away helps
R
I've had this problem...very painful. I use Working Hands at night and wear white cotton gloves.
Hi ellislm,
For splitting skin due to winter dryness I apply a dab of "Bag Balm" used by farmers on cow udders. Just massage in a small amount. For splitting and weak nails I use a pill supplement called Biotin 5000mcg (note: not mg) which is not perfect but a definite improvement if not taking any.
WWW
You can get a tape for fingers and toes which has a steroid and works great. My fingers were cracked and needed help.
Thanks. What is the name of the tape with the steroid?
Haelan tape. It's really good
Hi Mac-
After 2 plus years on ibrutinib - I have tried a few therapies to heal the annoying cuts. Liquid bandaid works as a temporary fix.
The best treatment is to keep the cut covered. I have bandaid tape with me at all times. It usually closes and heals in a day or two with this this method.
Hope this helps.
Diana
Thanks for all the comments. I have been taking Biotin for a while now..helps a little with my nails, I guess. Recently have had to use liquid bandaid a lot for what I thought were paper cuts on my hands..now see many have this problem with Ibutinib. I have been on it for 18 months now. Good to have this network.
I too have cuts on my fingers and my cuticles are messed up. I try to keep the skin moisturizer. If the cut is really bad, I use neosporin and cover with a waterproof bandaid.
I have the same painful problem. I find steroids of little help. Biotin & clear nail polish for the men is reported to help some for their nails.
Any one know why this is one of the side effects ????
stewie
Ibrutinib inhibits Bruton tyrosine kinase by covalently binding to cysteine 481.
Whether ibrutinib affects the hair and nails by binding and altering cysteine-rich proteins of hair and nails or by means of another mechanism remains unknown.
Thank you chris , not much we can do then just try and address problem if it occurs .......wish i had you in my human biology classes at uni .......
stewie
x
thank you all for your interest
Hi, Mac! Try Heel Rescue. It's the best I've found. Use on feet & hands whether you think you need it or not. Re: Ibrutinib splitting, prevention is easier than repair!
Hi ellisl,
My cuticles and nails are such eyesores with all the tears, breakage and splitting. Have taken to keeping my fists balled up a lot due to the embarrassment while I wait for them to "heal". I don't know if I look more defensive or just insecure... 😒
Anyway, my Dermatologist prescribed Desonide ointment and Urea 10 lotion. They help some but it takes time. Hope this info comes in "handy".
Bree
4 years on Ibrutinib and now seeing elevated BP
On Ibrutinib for 1.5 years and doing great!
On "watch and wait", but started to suffer with eczema
Problems with Neulasta after IVIG and in Ibrutinib
