Ibrutinib & hair

[CoBubby]

Are there any side effects regarding hair? I've read about nails & muscle cramps. Trying to prepare myself before I start.

[lfm73]

My doctor says no, but I have been steadily been losing hair for over a month. Not sure if it is CLL or ibrutinib.

[virdieblue in reply to lfm73]

So does mine- but I have lost a little hair which has been growing back in for a few months. Ibrutinib has given me waves where there were none!

Virginia

[Moma64 in reply to virdieblue]

Same here! My hair has always been stick straight and totally flat....not anymore!! One positive side effect!!

[Hidden]

Acalabrutinib makes your hair turn curly (at least for me).

[Cllcanada Top Poster CURE Hero]

Imbruvica (ibrutinib) made my hair go curly, quite commonly reported by patients...

~chris

[Cgolen99 in reply to Cllcanada]

Omg! My hair is excessively curly!! Maybe mine will go straight? Here’s hoping! 😂

[fell in reply to Cgolen99]

My hair is also frizzy/curly but I blow dry it smooth. It’s gotten frizzier, curlier and is breaking. I hope you have a better outcome! 🤞

[Cgolen99 in reply to fell]

Thanks.. see my comment below about the haircare treatment system. It’s been incredible!

[CLLCalifornia-USA]

I've been on Ibrutinib since January and doing great. The underneath layer of hair on the back of my head has gotten wavy and is turning darker. My hairdresser pointed it out to me last month. My hair was nearly white, so I've been coloring it a platinum blonde. She has noticed it getting more like a dark salt and pepper from the crown on down. Mainly on the under layers. My hair continues to be thick. If that is my only side effect, I can live with it. Best of luck. Sally (USA)

[starsafta]

Everyone has a different experience. I was sad not to get curly hair. Instead, slow thinning. Since taking Biotin for brittle nails and cuticles, my hair seems to be more stable, with better texture, shine and thickening. Nails smoother and a tad stronger, hoping they will start growing again.

Good luck.

[PE1234]

My hair has gone really curly and like Sally it has changed colour .I too have noticed that it is quite dark in places .I must admit I don't care for curly hair .Its also quite coarse and lost a lot of its shine .

Brenda

[kimiD]

I have noticed my hair is thinning, dryer, duller, and frizzy since being on ibrutinib. Haven't seen my "real" color in years, so I couldn't tell you if that has changed.

[fell in reply to kimiD]

Hi KimiD,

Unfortunately, my hair has also been thinning pretty rapidly for the last couple of weeks along with the other lovely side effects that you describe 😕

When did it stop thinning (if it has!) for you?

Thanks,

Fell

[kimiD in reply to fell]

I'm not sure the thinning has stopped yet. The frizzy curls have grown out though, it just feels very dry.

[fell in reply to kimiD]

Ugh, not the answer I wanted to hear but small price to pay! Thanks for getting back to me so quickly

Best

Fell

[fapumpkin]

I have been on ibrutinib for 13 months and whilst cleaning my shower I found the drain full of my hair. My hair in not falling out, it is snapping off around my forehead and temples, which makes it look like I have had a fringe/bangs cut, which I have not. It has become quite curly as well. My nail problems have now calmed down. I just changed my hair style to accommodate this.

[Jm954 Administrator]

On Ibrutinib - nails terrible but hair much thicker. Sad to say it's not curly, I wish it was!

[chihuahua36]

I've been on ibrutinib for a little over a year. My hair thinned quite a bit for a few months, but now has gotten thicker. I have always had very curly hair, so can't say what effect ibrutinib has had. However, my nails are in horrible shape. I have always had good nails but not now - splitting, cracking, breaking. I am also having strange cramps in my fingers and a smaller amount in my toes.

[IAMSUEBW in reply to chihuahua36]

I agree with you about the nails. I have been on Imbruvica for 14 months. My fingernails were good and strong until about 2 months ago. I am taking Biotin, but nothing great yet. I get cramps in my hands that turn the outer side of my hand and my index finger locks. I cannot move it until I press my hand on a flat surface to get it to relax. All the time it is deformed I have serious pain. Do you have the same problem? I get spasms all over, but sometimes my ankle will kick and I have to stand and get it to release, as if it were snapping back in place. I am doing really well, numbers wise, in Ibrutinib if only the side effects would diminish.

[kimiD in reply to IAMSUEBW]

I do get horrible hand and foot cramps. Making sure I'm getting plenty of water seems to help, but some days nothing helps.

[IAMSUEBW in reply to kimiD]

Thanks kimiD,

I am better with the cramps lately. I find that I get more hand cramps when the weather is cold and my hands are real cold. I drink plenty water as well, and you are right some days are just those cramping days. If I could get my hair and fingernails to do better, all would be pretty good. I take biotin every day, twice a day and though it has helped, it still has not done very much for much for my nails. They are very brittle and snag on everything. I keep polish on them as this is the only way I can make them feel human. That may not be the best, but don't know what else to do.

Best of luck with your cramps.

[coopj in reply to kimiD]

try magnesium 400 mgs day.

[bkoffman CLL CURE Hero]

My hair got coarser and curlier. Brian cllsociety.org

[Cgolen99]

Just an FYI, I have been having such miraculous results with Monat Haircare, that my hair finally stopped breaking and thinning and is quite incredibly strong and growing again. All natural-based, free of all the waxes and silicones and chemicals... I signed up as a Market Partner in order to get a bigger discount because I was also ordering for my daughter who lost so much hair from her gastric sleeve surgery . However I have had so many people come to me for help after they saw my results that I have now become a bigger part of that company. That’s all I can say is if you’re having any hair issues at all to check it out. It changed my life and this was even before the medication .. I anticipate they will keep my hair in good condition at least I have my fingers crossed!!

[Porter01 in reply to Cgolen99]

Hi was looking for help with thinning, breaking hair on Ibrutinib and saw your info on here.

Are you on Ibrutinib and is the Monat hair care still helping???🙏🏻

[CoBubby in reply to Porter01]

I never used that product. My hair eventually stopped being an issue on its own. The texture is changing , but slowly.

[Cgolen99 in reply to Porter01]

Yes I have used nothing else and it really is a Godsend. Helps maintain hair growth and thickness. I still thin and break from time to time (menopause? Ibrutinib? CLL?) but their wonderful range of products has saved me. So much so I became a distributor,. I don't believe I will ever use anything else again. Very clean product, Natural based and a wide variety of products for all sorts of issues.

[Porter01 in reply to Cgolen99]

Good to hear! My hair texture has become so fine with less volume and there is some breakage in just 2 months. Do you have a website? I live in Seattle area

[Cgolen99]

I do. (Contact information deleted - Admin) and I can give you more contact info from there if you wish.

[AussieNeil Administrator in reply to Cgolen99]

Hi Cgolen99, I've deleted your website and contact information because (a) the HealthUnlocked site doesn't permit advertising and (b) For your protection, don't share email, phone numbers, etc. Please use this site's Chat/PM facility. Just select the avatar of the person you wish to message and select "Message".

Neil

[Cgolen99 in reply to AussieNeil]

Got it! Just FYI, I have never advertised anything that I do on the side here whatsoever I just was trying to answer her question and actually get to a different venue to giver her more info if needed, but I didn’t realize there was a message ability so thank you for letting me know ..

[Bowler29]

I've been on Imbruvica for 6 months now, and my hair texture has changed. It is very thin and looks fried. I'm so upset with it. 😥