Hair loss

[CuseNurse]

I have had a lot of hair loss since taking imbruvica. I keep telling the doctor and he says, it's not something that was reported.

[MsLockYourPosts Passed Volunteer]

Hair changing - getting curly, for example - has been reported, as well as many problems with fingernails. It would seem to make sense that hair could be affected in other ways. Hopefully someone with experience with Ibrutinib can chime in. If you have a good dermatologist you might want to ask the question there, also.

[CuseNurse in reply to MsLockYourPosts]

My hair got curly too. I had problems with my nail splitting, so they never grew. What type of problem are you having?

[MsLockYourPosts Passed Volunteer in reply to CuseNurse]

I am not on Ibrutinib, but have read what others have had to say about it, including side effects, from day one of the trials. Some have found that taking Biotin helps with the nails. I don't know about whether it would help with hair.

I have had what I now call Ibrutinib nails, because I've had problems with mine since shortly before my diagnosis 16 years ago. - long before Ibrutinib. My dermatologist tells me to keep them as short as possible. I took Biotin for a while, with my doctor's knowledge, then stopped, because I didn't think it was helping. My nails quickly got worse, so I'm back on it. Not a fix, but it seems to help some. Ask your doctor about the best dose for you, if you decide to try it.

Some have said that Sally Hanson Hard as Nails helps, though men wish it came in a non shiny version. Band aids when things split. Others use Bag Balm, Working Hands, Udder Cream - I'm sure that there are others - especially at night with gloves on for nails and split skin.

If you do a search here, I'm sure you will find many comments about nails and hair. The above is just my summary of what I remember. Let us know if you find other solutions. I'm sure there are many out there who would appreciate you sharing.

[CuseNurse in reply to MsLockYourPosts]

I have found a solution to my dry, splitting nails. It's a script betamethasone dp aug 0.05% gel. I apply it to my nails, rib it in and it works. I have hard long nails again. Now if I could fix the bald spots on my head. Everytime I tell my doctor about my hair, they say hair loss is not a side effect listed. But I have the bald spots to show them.

[penny13204 in reply to MsLockYourPosts]

I took biotin for hair and nails no help. But I had my doctor prescribe betamethasone dipropiinate gel. I apply it to my nails they are stronger and grow now. Try it. My hair is just a mess. Nothing has helped.

[mrsjsmith in reply to CuseNurse]

Hello,

In the UK and I was also told by my Consultant it is not a side effect of Ibrutinib ! There are some previous posts saying the new single pill in the US may well add this to the fact sheet.

I found after month 1 I was clearing the shower trap and my hairbrush daily. I was already using the Aveda conditioner for thinning hair that contains Turmeric. I switched to a very gentle shampoo and am trying one from an Australian brand called Aesop. Got my hair cut shorter for the summer and started on biotin as well. Now on month 6 and hair lost stopped about a month ago, so I hope the same happens with you!

Regards

Colette

[lfm73]

I did at first, but it grew in again, but was more curly. After 16 mo there has been a little thinning again, but not as bad. Hope it grows again

[fell]

I had dry curly hair before treatment. My hair is now quite brittle and breaks very easily. I’ve ‘lost’ quite a lot of hair and it continues to break but not as badly as it did a few months ago. I’m on month 6 of an I/V trial. Here’s hoping that our hair disasters will soon come to an end! 🙏

[migirlusa]

Well I’m not happy for you but it’s comforting to know I’m not alone out here. I’m on Ibrutinib and my hair is falling out like crazy. The specialty pharmacy told me they are having a number of complaints. They give this information back to the manufacturer.

I’m not sure if the change to one pill makes the difference. . I take 5000 IU of Biotin everyday. I don’t know how much it helps my hair but I could use my nails as a screwdriver 😬

Hopefully someone will start to listen.

Pam

[BluMts]

I'm on Ibrutinib and a few months after starting it my nails started splitting, snagging and just did not seem to grow. Also my hair got dryer and began falling. My specialist said IB could cause nail problems but not hair problems. I began taking 2500mcg of Biotin, because consumerlab.com said a well respected trial saw results for nails in nine months of 2500 daily. I always try not to over supplement in trying to keep things balanced. However, at about four months I could not see improvement and decided to take 5000mcg split into two doses. Figured we on IB may have a raised need. In few months I did see great improvement in nails and hair stopped falling out. I think it was the biotin. Some take 10,000 mcg but I'd not, even if it were to give me a lions mane.. Which I'd love though never ever had!

[mrsjsmith in reply to BluMts]

Hello BluMts,

it seems we sometimes know more about the side effects of Ibrutinib than our Consultants ! I was told this week that back ache is not a side effect ?? Its even listed on my facts sheet from the drug company.

I have been taking a low dose of Biotin since reading about it here and have already noticed a difference to my nails.

regards

Colette

[CoBubby]

I posted about this recently! I am still shedding a lot. I have gone to washing less frequently, and not every two-three days. Also, not always using a dryer. It really doesn’t matter.

I am hoping it grows back. Then it seems, according to others, I will deal with wavier hair. I started with very thick hair that had a lot of body.

I started Ibrutinib (3 capsules) in January, was off for 5 weeks, and have built up to 2 capsules. The hair loss started in July.

I started 5000 mg biotin just prior to starting Ibrutinib. Can’t imagine what my nails would be without it. They are not great.

Guessing the manufacturer and doctors don’t consider this a big deal?