59, diagnosed at 53 with unmutated, del17 CLL and started Ibrutinib June 2019. Fairly wild ride to date: early on was a lot of edema, particularly in lower legs, ankles and feet. That subsided in time, as promised. Blood tests are almost normal now, as promised.
My nose has been cracked and bleeding every night for the past couple weeks - not as promised. Hopefully this dissipates.
But, the bruising, as promised, has recently arrived. Bumping into a cabinet door which in past was a nothing, now leaves a long (but not deep) bruise. This is something to think about - no wonder they said "no contact sports". So much for my post-retirement MMA career... But seriously, that would include playing catch with a baseball. I used to take throws from under-13s barehanded to show that a glove is just insurance and that technique (catching the ball in the palms of your hands) is key. This also means that hammering, working on cars, chopping wood at a campfire and many other tasks will, if done, leave significant bruising.
But this is the tough one: broken fingernails and skin that splits on my hands, and especially around the fingernails. The joys of CLL include increased infections so skin splits become infected quickly. These liquid bandaid products can be helpful but they aren't perfect. (For those that haven't experienced the skin splits, this is NOT just dry skin - these are deep splits and, of course, they get infected too.)
The fingernail issue might not seem that big of a deal if you haven't had it, or not yet, but when the nails peel off like soft cheese in a grater, then you'll know what I mean. For a semi-pro keyboard player, this is tough. With the ends of the nails in tatters or missing, there is nothing to protect the end of the fingers, leading to bleeding and bruising.
Here's my question and concern: is this another passing phase like the edema? Has anyone had the soft, brittle nails and gotten over it? I've started using Witchcraft nail products to repair and strengthen and I'm not yet seeing a noticeable improvement over the Sally Hansen products.
For some background, everything causes the nails to break: leafing thru paper, lifting almost anything, etc. The nails will actually bend back 90-120 degrees before snapping.
Hi CoachG! I was on ibrutinib for 2.5 years. I took biotin the whole time (5000 mcg daily) and did not ever have fingernail problems - perhaps because of the biotin. But definitely had the problem of skin on fingertips cracking and developing fissures that would not readily heal and became slightly infected (as in hot, red, sore). I was switched to venetoclax 2 months ago, and fingertips are back to normal. (I was switched because of heart arrhythmia.)
Good luck to you! Ibrutinib is an amazing drug for controlling CLL. Hope the other issues subside or you can find some workable solution.
Biotin helps somewhat, but I found that it kind of comes and goes. I don’t have a miracle potion to tell you about because I have tried many and not found anything to keep it completely at bay. I will say you should use creams instead of lotion. Find a good cream ( I amd sure you will get more responses) and use it multiple times a day. Try not to be in water too much (ha!) Try to find some soft gloves and cream up your hands before bed and wear the gloves to bed. Good luck. My fingers and nails have finally come back to almost normal; but my Ibrutinib has been cut to 140 so I believe that is the reason. Good luck!
I imagine the reduced dosage is saving your nails. I have gloves for night time wear with glysomed, regular and extreme repair. I've tried a few other creams as well. The Biotin made no difference for me so I quit it after six weeks.
You have to give the biotin a chance as it takes months for your nails to grow out. I started taking biotin a couple of months before I started Ibrutinib, which I started in January, and am now seeing stronger nails, which help protect the tips of my fingers from those cracks.
I don't think you would notice improvement in 6 weeks. It takes 4 months for new nail to grow from bottom of nail bed (the cuticle area) to top where you actually have a 'free-standing' fingernail that can break or tear.
Coach, the following post has suggestions that others have used for the skin situation on your fingers. There are other related posts, if you search for ' Ibrutinib side effects' in the search box above the Related Posts column.
I have not had the fingernail problems but now and then have a very deep bruise appear here or there. They go away. I don’t restrict my activity in anyway, it’s not like I play any contact sports anymore anyway.
My platelets moved up into the low normal range so I don’t worry too much about the bruises. We don’t get any free rides with any treatment. I hope your fingernail problem improves.
Maybe at some point both of us have our docs add venetoclax for a year or so and we are able to stop both drugs. I think that’s where the clinical trials ongoing now will eventually point to.
I have been on Imbruvica for about 3 years. I am having similar and worsening experiences with the nails and splits on the fingers. I’ve tried Miracle nail cure. It’s a pretty tough coating and can help splits that go deeper, but really not a noticeable help from crumbling once they get past the nail bed. Lotions, creams, and even working hands don’t seem to help the finger splits. They heal up pretty good though with Polysporin covered with a band aid. Small punctures like rose pricks seem to take a long time to heal and look dark and bruised around them.. I have had a couple get infected as well. I’m always surprised at how much I depend on fingernails when I don’t have any functioning. Almost impossible to open anything without the nail to help with the gripping. Even worse with pain from the split fingers with any pressure.
So true, like trying to open a pill reminder box, or punch out a pill from a foil packet. Even zipping up the ziplock bag for the cat's treats. Right now, both thumbs and both middle fingers are cut and infected. Real party time...
Been on Imbruvica for 3 years. Nails splitting and ends of fingers cracking have been on going. I even getting bleeding from fingers around the nails and it really hurts. Been soaking my fingers in very warm table salt water and this has been helping with healing. I can push out any infection, then put on healing ointment and a bandaid and within a few days, all is well. Good Luck.
Yep. Fingernails like paper. I tried nailtiques and it helps (recommended by a nail salon I went to for advice). The bruising I can live with but the sores in my nose are a real pain! I have been putting vaseline in my nose and t really helps. Good luck!
Prior to this outbreak, my GP recommended using cool water as hot water dries out the hands. So the new washing technique really runs against us...
I was using a milder liquid soap that doctors use, Cetaphil I think, but it is about $20 a bottle and I've run out. Using Dove bar soap as it is quite gentle
Recommendations for biotin are 10000 mcg for at least 3 months to take effect on fingernails. It could be worth checking on your amounts and get back on it - as well as trying anything else others can recommend.
Every time I read about a product on here I try them, I think 4 so far plus Biotin and none of them have worked for me. You need to be careful and stop Biotin a week before blood tests as it can skew the results.
But what I can wholeheartedly recommend is a product called Hexomedine. My local pharmacy is run by a French woman and she introduced me to this. It is wonderful for those deep skin splits by the side of nails. It has been so amazing with quick results.
My biggest problems with nails was my toe nails, particularly the big toes. I never had an ingrown toenail my entire life until I started taking Ibrutinib. The problem was resolved with a partial permanent toenail removal. One problem still remains, however - the heels of my feet are quite dry and crack excessively. I've used a foot cream that seems to help some, but not completely. Is Hexomedine good for cracked heels?
Luckily my feet are not too bad ( but no trips to the chiropodist for a while ) so I haven’t tried Hexomedine on my feet, but no reason why not. Have you tried O’Keeffe’s, that’s what I use on my feet.
I haven't tried O'keefe's. My dermatologist prescribed Urea 20 Cream which, as I noted helps somewhat. I'll try Okeefe's though and will cross my fingers. Thank you.
LOL. I just re-read this reply and had a first-ever ingrown toenail last year that was partly removed in January and is essentially now healed. The podiatrist was shocked how long it took to heal compared to non-CLL patients. That was a brutal stretch with the nail cutting my toe daily, bleeding, getting infected despite daily salt water soaks. Hope you are okay now
Yes, I am doing fine since my partial permanent nail removal. Sorry to hear it took so long to heal from your partial removal. Do I understand you to say that during the healing the nail was cutting into your toe daily? I don't understand, if the nail was properly partially removed, it should have stopped cutting into you toe. The only healing that should have occurred would have been the healing from your nail cutting into your toe PRIOR to he partial removal. In any event that was my experience,
Sorry - to clarify: the nail started being a bitch in May 2020 and became a real bitch in August 2020. The first tact was to see if it would grow out - it didn't. So we did the part removal in Jan/21 and it healed up in late Feb., about 6 weeks after the procedure. It is apparently a 2-week heal for healthy people. It was still tender until a week or so ago and looks pretty normal now, so about three months since the procedure.
30 months on ibrutinib. I too have the nail weakening & thinning. VERY ANNOYING. I keep my nails very short, VERY gently file the ends to help prevent snags, use a GEL polish clear top coat and good lotion like Jergens. Its a pain but Im greatful for the results of the meds.
I continue to do my regular activites and do experience the looooong healing time from bruising BUT I have found ways to be kinder to my self.
I wear gloves when doing chores, Different types of gloves depending on what Im doing. And Awareness.
When I have the PAINFUL cracking and hardening around my nails I do need to use Neosporin OINTMENT and double bandaids. I play guitar so I have mastered how to apply the bandaides to continue playing. Its alittte rough.
Biotin us helpful, I use 5000-10000 per day, chewables. Keep in mind to stop biotin about 5-7 days before blood tests.
I have tried to find a new normal without giving up too much of my old self. Its finding a new approach to the things that make me ME.
Biotin really helps. I take the 10,000 mcg tablet. Smaller one didn't work for me. It's not perfect, but it helps. I do bruise easily, but I didn't give up figure skating which when you fall on hard ice becomes a contact sport of sorts. I found the bleeding resolved, though petechia is also an issue I have.
Living in a winter city, falling on ice is a daily danger - the snow still isn't gone - so my hematologist warned me not to fall on ice. I was waiting for the local rink to open when it occurred to me that I fall a lot while skating so I gave my skates away. Doesn't stop me from skiing though.
I don't mind the petacheia, but I had that scabby crap on my skull for a while. Dovobet cleared that up and it hasn't returned. The Dermatologist said he sees a number of CLL patients with that condition.
I moved so I haven't been to the rink much in the past 6 months, but previously I was jumping, etc. I get more bruises bumping into things at home. Be careful on the ice. I live in Philadelphia, USA. We had no snow this year.
Split fingertips and nails are still an issue for me after 1 1/2 years on Ibrutinib. I can say that it is better in the warmer weather than the cold. I also soak my fingertips, as needed, in olive oil. That definitely helps. I soak them for 10 minutes each hand.
Yes - I learned about the olive oil trick on this site. It's popped up a few times and the people swear by it. My only problem is that I lack the patience to sit there with each set of fingers dipped in the oil for 10 minutes so I don't do it as often as I should.
I have the same splitting, breaking fingernail problem, as well as the deep skin cracks beside my fingernails. My nails are all broken down below the nail beds. The only thing I've found to help is putting on heavy hand cream and gloves overnight.
I have been taking biotin for over a year now and think it helps slightly but as previous replies have said you need to allow for several months taking it to allow the "old" nail to grow out. As a keen DIY er, I find it really frustrating to keep having split and jagged nails and now keep my nails cut really short to avoid the splits but it has the disadvantage of not being able to use your nails for gripping small items like pulling out the winder on a wristwatch or much more importantly not being able to open the ring pull on a can of beer!
I find since being on the ibrutinib, my nails grow very quickly and my theory is that because they grow so fast, they don't have time to thicken at the roots and as a result are thin and brittle.
A bamboo tree grows super slow and is super strong, so your theory makes sense. I hadn't considered that the visible part of the nail couldn't be saved by Biotin and that the whole nail has to be grown out.
Penkman, I've been on 10,000 mcg of Biotin for about a year now and still have all the nail chipping issues and fingertip cracks and I can perfectly echo what you are saying about watch winders, beer can tops and the like. The last two months have been markedly worse, as others have found nearing the two year mark. I can rarely play the keyboards because my fingers hurt too much - even typing on the computer is uncomfortable. I tore off a piece of thumbnail this morning on my pants fastener - something that has happened from snaps and zippers plenty in my 22-month IB journey.
I have been using sofsoap antibacterial with aloe and my hands are not dry anymore....also, I do not take ibuprofen or baby aspirin anymore because of clotting issues I've read about. I, too, bruise easily so gave up contact sports and picked up biking, hiking and swimming for cardio. In the long run, it's better to be safe and alive than bruised and .....😉
This has been very helpful, thank you. I hadn't realised that my impossibly fragile and broken nails were due to the Ibrutinib although of course I suspected. I have been on it since Sept 19 (also Venetoclax since Nov) and the excessive bruising seems to have been better recently. My nails have gone all ridgy as well as breaking at the slightest touch even although kept short. I will try some of the remedies suggested. Good luck to you.
I have the same problem except they don't get infected. they are very painful. What has helped me is 100% pure Johoba oil applied at night and in the morning.I put is on my hair too.
I have also use Aquaphor. I heard some have soaked fingers in Olive oil.
I use Mavala Scientifique K+ .I am type 1 diabetic and on Ibruitinib for CLL( 20 months) I have used it since the 90s , I am a bit remiss about applying it regularly but always works for me.When I first used it I was told I could apply it daily if needs be only on the ends of the nails. Like you did have the gambit of side effects to start with but nit as severe as yourself.The main one now is dry mouth and swollen lips but the bruising etc definitely subsides. Best of luck xx
One further remark on ibrutinib and bleeding: I am getting nasty whiteheads on my arms and legs and "normal" sized ones on my face (below my lips and just below the nose). This only started with the Ibrutinib - anyone else get this? Also, I occasionally have blood coming out of (_____________) on the top of my nose. I left the blank there as I don't understand what this is. Currently, I have this spot that keeps bleeding, especially if I towel dry my face. There is no pimple or anything visible to me, just a spot that will reopen day after day and bleed for 5-10 minutes at a time. I don't know if this is an extreme petechiae but I doubt it because there isn't a red mark there normally.
I guess if one's nose is bleeding on the inside, it might as well bleed on the outside too, right?
That may be petacheia, which Is a rash-like thing. Very common but benign. Be very careful with sun exposure as mid-day sun without sunscreen is dangerous on this drug and can lead to skin cancer.
After writing my post about the particular bleeding, I found an article on basal cell carcinoma that seems on point. It doesn't spread but it sounds like they dig it out of one's skin, which sounds like there would be a hope after that. I'll have to follow up on that.
The bruising usually goes away it’s more of a cosmetic thing then anything serious from what I was told. Some people soak their basil in olive oil that seems to help . For your noise is it dry inside ? You might want to try some nasal spray like hydra sense
I have been on Imbruvica for a year now and it seems like you go through all of the side effects for a time then it’s on to the next one. I have the nail problem with the splitting of the ends of the fingers. Taking biotin for it and it seems to help. Using some kind of special salve as well.
Now I am having the joint pain issue as well. Have had the bruising and blood spots as well.
Imbruvica kicks CLL’s butt however it does have a cost. I am grateful I have it and don’t know if I would be alive without it.
My newest friend is a jackknife which I use to open most things. I have to train myself to use if for everything as I wrecked a thumbnail removing the foil cover on a new jar of peanut butter.
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