CLL Support Association

Side effects of Imbruvica

I have been on Imbruvica for 9 months and am having hair loss and problems with nails. I notice some posts about Biotin and will look into that. A week ago I started treating my nails with Nailtek 4 and cuticle oil. I am noticing they are getting stronger and growing longer. You can order on Amazon. Did not see any posts about treating hair loss. I hope my hair loss stops soon. Even so, i am thankful that Imbrutinib is available and working for me.

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Interesting. Hair loss is not a symptom of Imbruvica. I've heard cases where you're actually REGROWING hair... albeit curly hair... but I've never heard anything about hair loss with Imbruvica. Could just be a sign of something else, or just age.

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Have left a reply hope you receive it! Haven't found my way around this site yet! Chloe

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Stress can cause hair loss rather than the medication.

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i have seen several post it. Myself...I have had ultra thick hair forever. Had to get a haircut every 3 weeks at least and now I get one every 2 months just for shaping. i also had a tail which was about 24" long and now it is about 6-8" long and very thin. When I wash my hair or brush it it comes out.

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Hair loss can occur any time the body is exposed to sustained stress for weeks or months. Physical stress, emotional stress, chemical stress, any kind of stress. So even though it may not be a direct or listed side effect of Ibrutinib, everyone's body reacts differently to this drug in terms of other side effects. I think if other side effects are strong enough, then those side effects could become the prolonged stressor that could result in hair loss. Depends on what the side effects are, I guess. Or hair loss could be due to somethng else entirely.

Biotin is supposed to strengthen hair as well. But that won't necessarily reduce hair loss, since hair is dying at root in that case. I am taking 5000 mcg of Biotin daily since starting Ibrutinib.

kim

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I too have suffered hair loss quite significant recently. I agree with everything that PlanetaryKim has said. I would just add though that l know a "professional" herbalist in Ipswich who is really amazing. When l became really toxic initially because of the Pesticides he made up some detox tincture which was aimed at my liver, won't go into too many details but it really helped! I thought l had become an alien (ha ha) because my urine had a green look, it was the toxins being forced out of endocrine system mainly my liver. Am going back for another consultation soon. He and his partner own a shop in Ipswich, Suffolk called Sacred Earth they have a website and do online enquiries and orders. May have something for hair loss! They grow their own herbs too and import others. Really know their stuff. My mother has been going there for over 35 years. (They say the devil looks after his own) Maybe also try thinking about a Chinese herbalist? They also do amazing preparations l have seen work. Good Luck though l would get in touch with Sacred Earth and make some enquiries.

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Hi jorjabcs

I lost hair during the first several months of taking Ibrutinib. After about nine months my hair started to grow back. My husband was really happy. At the moment I am temporarily not taking the drug and my hair has started to fall out again. Very confusing. Good luck.

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Mine has done the same way! My nails also split.

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Biotin seemed to fix my nails. I take 10,000mcg/day. There are many factors going on with everything for all of us, and it's sometimes difficult to determine what is doing to what in combination with what. But I think Biotin is what made my nails strong again and stopped them from peeling, chipping. breaking. And if it is capable of helping to give "thick lustrous hair," then more power to it.

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How long did it take? I've been on it for 3 months and my nails are still bad.

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With the 10,000mcg perm day of Biotin, I think I started to notice results in a couple of weeks, and after a month I was in much better shape. I’ve been taking it for five months now.

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Im still struggling with it too. I only started the Nailtek treatment two weeks ago. The cuticle oil is working and I use it every day to keep the cuticles from turning into hang nails. I'm also using Enjoy hair & skin treatment oil at night with gloves. It is pricey but a little goes a long way. I apply Nailtek 4 every day as well. It does make my nails stronger and keeps them from peeling as bad but not completely. I just started taking the Biotin last week, so I'm hopeful that will help as well. See the comment from AmericanRonin where he noticed improvement on Biotin within a couple of weeks.

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Yes doing Biotin too but not really seeing much improvement. Oh well.. don't want to sound like an ingrate - small price to pay for drug that is working well for me. Just know there must be something to address it that works. The search continues! 😊

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I know hair and nail problems seem petty, but that is why we address them here...in case these issues are indicative of a bigger problem we may be unaware of.

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I've been on Imbruvica for 5 yrs. now. My hair has gotten thicker & curly . When I started on Imbruvica I wore a wig because my hair was so thin. As for my nails I just put oil on them everyday.

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¿Sigue tomando Imbruvica aun? 3 píldoras por día.

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No comprenda

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I wanted to ask if you are still with Imbruvica after 5 years. and if you continue with the full dose of 420 mg sorry for my English

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16 months in... male and bald. If as EllieOak says Imbruvica will help grow hair I'm buying stock in the company...

Nails splitting and brittle as well as split fingertips is a real problem. I carry Liquid Bandage at all times and use Hard as Nails. I'm going to look into Biotin as mentioned in the earlier posts

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Another potential cause of hair loss to keep in mind with CLL is anemia. Anemia can and often does result in hair loss. I have read that anemic people experiencing hair loss will not be able to halt hair loss until serum ferritin reaches at least 80. (That would be in the case of iron-deficiency anemia. CLL anemia might have different parameters, like maybe Hgb below a certain point.) I have been quite anemic for 2+ years as a result of my CLL. I have gone through periods of noticeable hair shedding. Seems to not be happening now.

kim

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Typically hair will get course and nails will split after being on Ibrutinib/Imbruvica. It happened to me after being on it for 15 months. Letting hair dry naturally without using a blow dryer is kinder to hair. Also get a spray conditioner that is used after shampooing and stays in the hair. As for nails, I've not conquered that condition.

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Curious how long the Nailtek 4 took to feel a difference?

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