Hair loss on Ibrutinib

[Kyranbigeyes]

I started taking Ibrutinib on July 4th. I also started taking 10,000 mg of Biotin. My hair seems to be breaking off. Is this a temporary side effect or a lasting one? Thanks for your comments.

[country76]

I had the same experience plus the Ibrutinib affected my thyroid supplement so my hair broke off and thinned out. I also was taking the Biotin. My hair grew back thicker and kinky.

Not sure if would continue breaking because for other reasons I switched to Alacabrutinib,

apparently it is common for breaking hair there are several posts related to that.

[morepork]

It's certainly happening to me since on Ibrutinib -and that's a few years now - most of my once lovely thick hair has disappeared onto the floor- snaps off when I comb it. 👀

[BluMts in reply to morepork]

Wondering if you are taking Biotin and hair still fragile. Or did you decide not to take it?

[Kyranbigeyes in reply to BluMts]

I’m taking 10,000 mg a day. I hoping this will subside. Thanks for your interest.

[BluMts in reply to Kyranbigeyes]

That's awful for you. Wonder if changing your brand or breaking dose into 5000mcg twice daily might help as it does help some people. Biotin is excreted in water.

( guessing you meant you are taking 10,000 mcg).

What about taking some college powder.

As you had thick healthy hair before IB, this must be so annoying for you.

[Kyranbigeyes in reply to BluMts]

Thank you for your help. I’ll try taking 5000 of Biotin twice a day. I just ordered the collagen powder

[morepork in reply to BluMts]

I've just ordered Blackmores" Nails, Hair and Skin" which has biotin and other minerals in it - (my nails are brittle and breaking too). Have your nails been affected at all?

[Kyranbigeyes in reply to morepork]

No my nails are fine. They are very strong. I’m using Natures Bounty extra strength hair, skin and nails with Biotin. I bought it at Costco.

[fell]

Hi Kyranbigeyes,

I was on an I/V trial for 15 months and unfortunately my hair also experienced a lot of breakage. It did not really recover until I finished the trial. It is now 15 months later and my hair is totally back to normal.

I am also on 10,000 mcg of biotin.

Try washing your hair with sulfate free shampoo or even just conditioner and try to trim your hair on a regular basis.

I understand how frustrating and upsetting it can be 😕

[Kyranbigeyes in reply to fell]

Thanks for the tips. I will try a sulfate free shampoo.

[BluMts in reply to Kyranbigeyes]

Kyranbigeyes, I'll endorse fell's recommendation of sulphate free shampoo. I'd thought of mentioning it to you along with the Biotin. It's made a huge difference to my hair. However my daughter who has a scalp that produces more oil says her hair does not keep clean on it. But it did look shiny on first day. A lot of these sulphate free shampoos are ridiculously expensive. I use the Elvive brand, dirt cheap and Good. And I speak as a woman who was buying brands like Aveda in the past.

One thing.. Shampoo and biotin will help whatever. But please note that my hair problems after Ibrutinib treatment got going, went in tandem with nail problems. If you don't have nail problems with IB you are lucky and leaves me wondering if your hair condition is not related to IB. Just a thought and sounds like Fell did not have nail problems either??

[Kyranbigeyes in reply to BluMts]

I’m planning on buying one of these shampoos. Does the bottle just say Elvive? I’m trying to find it on Amazon. I’m sure that my hair problem is caused by IB. I did not have my hair falling out at this rate before going on the pill. I did read that baby shampoo has no sulfates. If I can’t get it on Amazon I will go to the store and get it ASAP. I just want to make sure I buy the right one. Thanks for taking the time to try and help me.

[BluMts in reply to Kyranbigeyes]

Sorry had no Internet or electricity yesterday. You can get the shampoo on amazon or on boots online. Easiest to find is L'Oréal ELVIVE

COLOUR PROTECT

3 IN 1 LOW SHAMPOO.

This is in a white 400 ml plastic "bottle" almost completely covered by red label front and back.

It's discribe as FOR DRY COLOURED Hair. But pay no attention. It does not matter whether colour hair or no.

The is another Elive no sulphates called

ELVIVE FULL RESTORE. LOW SHAMPOO

Gentle cleaning creamN o foam no sulphates

Can't see much differ ce between these two in use. Maybe the second described is a bit less smoothing and less preferable, but not sure and I've not seen this second one for well over a year. Going to fo a check around now and will get back if can find this second described which is described for damaged, weak hair.

[BluMts in reply to BluMts]

Hi again. I can t figure if you're in UK or elsewhere. If in UK Boots do not have the second one only the colour. The second I described the Elvive Full Restore Low Shampoo is available on Amazon o. UK. for £5.98. Strangely, I did not see it on the. Com site, but must be available in the US and other countries.

If you buy this let me know later what you think.

[Kyranbigeyes in reply to BluMts]

I’m in the USA. I’ll have to find it over here. Thank you.

[Kyranbigeyes in reply to Kyranbigeyes]

You can’t get it here. I just bought LaVie Shampoo and Conditioner. It was expensive but I think it will help.

[fell in reply to BluMts]

I did notice that my nails started to weaken a bit but nothing like what others have reported such as Papercut like issues.

[Catnap7 in reply to fell]

So glad your hair returned back to normal Before I started my I/V trial my thick lovely hair was falling out almost in chunk like form Then I got on the drugs and it not only thickened tremendously but it looks like I got a perm I hate this curly mop !!! SO I am looking forward to it returning to normal again after my trial Mine is a 2 year trial that has now been extended longer for everyone By the way did you notice your body and energy level took on a rejuvenation? Just asking because I was taken off my drugs for over 2 weeks once and I felt so fantastic Best to you

Catnap7

[fell in reply to Catnap7]

I felt pretty well on trial, but now that I look back and see pictures of myself I looked a little green and as though I’d ‘been through the wars’

15 months later I look and feel more robust, walking 10 to 12 km every day with my dog and just feeling like a normal human being. I hope that my numbers stay within normal range for many years to come, but still try to prepare myself for the day when things might begin to go down hill once again.

[Kyranbigeyes in reply to fell]

Glad to hear you are doing well and you will have many more years to look forward to. 😊

[fell in reply to Kyranbigeyes]

Thank you!

[IAMSUEBW]

I have been taking Biotin 10,000 for a few years now. My hair thinned for several reasons before taking Imbruvica. I was off hormones for about 25 years and then had chemo in 2012. Both of these things contributed to my thinning hair and the ibrutinib helped a little more. I find that my hair is not falling out as fast since Biotin, but it took at least 1-1/2 years to start helping my hair. Also my fingernails were terrible and in the last 3 months have found a definite improvement. They are finally growing without the jagged ends and breaking all the time. Hope this helps.

[Kyranbigeyes in reply to IAMSUEBW]

Thank you for your reply. I’m glad to hear the Biotin is helping even though it took a long time to work. So far my fingernails are fine.

[CoBubby]

I have been taking Biotin. I went through a period where my hair was breaking off also. I had my hair cut shorter and into layers for the first time in my life. It just made my hair appear more normal! Also, I washed it only once a week, and didn’t use the dryer. Eventually my hair regrew. It does have a different texture.

[Kyranbigeyes in reply to CoBubby]

I’m going to get my hair cut shorter and wash it less. I usually put rollers in my hair. Thanks for your help.

[CoBubby in reply to Kyranbigeyes]

I would not use rollers right now.

[Kyranbigeyes in reply to CoBubby]

Ok. I’ll try to just let it dry on it’s own

[CoBubby in reply to Kyranbigeyes]

Ask your stylist to cut & layer so it can dry naturally...for now.

[Kyranbigeyes in reply to CoBubby]

I’m getting my hair done on Monday and that’s what I’ll ask for, if there is any left by then. 😊

[CoBubby in reply to Kyranbigeyes]

Good luck. Let me know how you do with it. Also, go gentle with the brushing/combing. I use my fingers more than anything.