Hi just wondering if anyone on Ibrutinib and rituximab is using increased doses of biotin to help with brittle nails and dry skin? I have just seen my consultant today and was told it was ok but just wondered if anyone out there has any experience they can share?
Thanks in advance
Ann
Ann - you will probably get more answers if you change your setting from everyone to community only (click on the v next to more, then edit. At the bottom of your post is the option to change the setting. Your post and any replies can end up anywhere - google, Facebook, wherever if the post is not locked. Many don't respond to Unlocked posts.
Hi Ann,
I've been on Ibrutinib (not with Rituxan) for nearly 8 months now. I soon got dry, cracked fingertips so started to take Biotin, as well as use a LOT of moisturising cream. The fingers improved.
Later I started to get serious gastric problems - pain after meals, nausea, no appetite. I lost a lot of weight. After a gastroscopy just showed gastritis and bile reflux, it was decided that most of my symptoms were probably due to Ibrutinib. I stopped the Biotin in case it was aggravating the problem. I was also getting joint problems and a nasty rash, so the Ibrutinib was reduced from 3 to 2 capsules.
Rash went, stomach problems improved, but after a few weeks my nails started to crack. So, a couple of weeks ago I started taking Biotin again. My nails are no better as yet, but I realise they grow slowly and it's a bit soon to know if the Biotin is helping. Fingers are OK at the moment but I do use a LOT of moisturising cream.
Sorry it's a bit complicated, but that's been my experience with Biotin. My doctor has been happy with my taking it on and off and on again.
Best wishes,
Paula
This may help................... From a pedicurist dip your hands in pure olive oil for 5 minutes every day .. Just wipe your finger after 5 minutes witjh a paper towel.............. Tremendous improvement............Best of luck
Hi Paula thank you for your reply. This is what I needed to here. it is my fingers that are problematic too. I will give it a try.
I hope your treatment continues to improve without any more side effects.
Kind regards
Ann
I have a subscription to an American research site, https:\\consumerlab.com , which recently updated its B-vitamin report. They provide many references to research articles, and pay for outside labs to do independent research on consumer vitamin and nutraceutical products.
They mention the reports of biotin being recommended for brittle nails, but they don't think that the research evidence is that strong. They cite several fairly old articles:
4. Floersheim GL. Treatment of brittle finger nails with biotin [in German; English abstract]. Z Hautkr. 1989;64:41-48.
5. Colombo VE, Gerber F, Bronhofer M, et al. Treatment of brittle fingernails and onychoschizia with biotin: scanning electron microscopy. J Am Acad Dermatol. 1990;23:1127-1132.
6. Hochman LG, Scher RK, Meyerson MS. Brittle nails: response to daily biotin supplementation. Cutis. 1993;51:303-305.
The middle one above seemed the most hopeful, and tested a dose of 2,500 mcg (2.5mg) for 6 to 9 months, which increased nail thickness by 25%. Here's the link to the abstract:
ncbi.nlm.nih.gov/pubmed/227...
On PubMed I also found more recent articles, but they are behind paywalls. In particular is a review of past articles:
tandfonline.com/doi/full/10...
However, ConsumerLab also mention that biotin supplements can cause false readings on several blood tests, such as troponin (used to assess possible cardiac muscle damage due to unstable angina or heart attack) and TSH (thyroid stimulating hormone). In large doses (10mg), they say it can falsely increase the results some biotin-based vitamin D blood tests. I have to wonder how many doctors know whether a given test is based on biotin.
Their advice seems to indicate that staying at lower doses is safer, even though there is no established upper dose limit.
In any case, biotin for nails appears to take quite some time due to slow nail growth.
=seymour=
While "the minimal dose and duration required to alter test results remains undetermined.", "It may be advisable for patients to stop taking biotin, preferably for a week as studied herein, before undergoing laboratory testing".
Hi Neil thank you so much for this information. After the replies I have received I have decided to give the biotin a miss.
I am doing so well on the Ibrutinib I would not want to take any risks.
The dry skin around my fingers is irritating but I can live with it and use external methods to rehydrate and moisturise the skin.
I hope this post has been helpful to others on Ibrutinib as these seem to be common side effects.
Kind regards
Ann
Ann, the post has very helpful to me. I begin Imbruvica this month.
Glad to hear it. It generated a larger response than I antisipated and I learned a lot too. Good luck with your treatment. Keep us informed of how it is going for you.
Kind regards
Ann
Hi Seymour thank you for your reply. I will read all the articles and have another chat with my haemotologist.
My fingers are dry which is not the norm for me but my nails which are usually very strong occasionally go through a weak phase every now and then.
I think for the time being I should delay extra biotin and see how I go. It seems wise to wait until rituximab is finished in July.
Thank you
Ann
I take biotin 10,000 mcg. Nails aren't perfect, but they are far better than when I didn't take it.
I started taking 5000 mcg about a month before starting the Ibrutinib. I was told it takes about 6 months to see any improvement, and that was about right for me. Not perfect, but a lot better than they were. It has worked for me, however my CLL specialist has requested that I not exceed 5000mcg. He hesitantly approved the 5000, but was adamant about not going over it.
BeckyL USA
Ann I started taking it before I started treatment - Ibrutinib and Venetoclax and while my skin is very dry I haven't had much trouble with my nails although they've always been very thin. I am trying out what a couple of members suggested yesterday - after I shower I rub coconut oil all over and then rinse off lightly and then pat dry. I think I can tell a difference but it's really too soon to know for sure. I'm keeping my fingers crossed!
Paula
I took 5000 IU with imbruvica.
I had no issues but did not seem to help my nails much either.
Hoffy
I take 10,000 mcg biotin. My nails and sides of nails has improved. I would sit with my hands in lotions , Vaseline you name it. So much pain. Been on the biotin for 2 months on ibrutinib for 9 months. Feeling great. Wishing everyone good luck 🙏🏻😘❤️
Thank you to everyone who has replied so good of you. As usual I have learned a lot.
Regards
Ann
When it got really bad I found putting some cream and Band-Aids on my my fingers really helped. Looked a little strange but kept the lotion on my fingertips and protected them .
Hoffy
I was just going to start biotin but didn't know what dosage. But I am not on ibrutinib...I start FCR and decided I should look into Hair/Nails 2 from MegaFood. Anyone hear of that? I am thinking of taking more for hair thinning. Also my doc suggested I take off my acyrlics during FCR just in case if any infection. I know for people on ibrutinib is very important to not have acrylics.
The mechanisms of hair thinning and nails becoming brittle on FCR and Ibrutinib respectively are not related.
There’s a school of thought that taking something to reduce the effects of chemo on other body cells (e.g antioxidants) also counters the chemotherapy effect on the cancer cells.
So if I understand you...if I take biotin etc ... It could interfere with my treatment? Interesting....
You should let your medical team know about all the supplements, etc that you are taking, just in case they interfere with treatment or test results...
Thanks Neil will stay away just incase and use external products. I have had a lot of good tips since posting. Thanks to all.
Ann
I am taking liquid B7 or Biotin. It helped some but not enough. Yet
Hi it takes time and has never returned my nails to normal, they don’t grow and are no longer strong but the ridges have gone. Keep persevering it’s worth it.
A.
Flair trail update Ibrutinib and Rituximab round 4
Ibrutinib V Venetoclax + Rituximab 
Ibrutinib while on Steroids
CT scan while on Venetoclax + Rituximab
