Hair Loss with Acalabrutinib

[Vinweesel2023]

I have been taking this drug since March of this year and in the past month my hair has started to fall out drastically. I had long hair to my waist but cut it thinking that was the issue. According to my oncologist my iron is low and this is the reason for the loss of hair. Has anyone else experienced this and how did you combat it?

[Jacksc06]

Hi. I had drastic hair thinning after Bendamustine and Rituximab infusions some years ago. I take Biotin daily and have had much improvement, it is also good for split nails. Not an overnight improvement but over the months the results were very good. Best wishes.

[Curling123 in reply to Jacksc06]

What dosage of biotin do you take? Thinking of doing the same. Thank you.

[Jacksc06 in reply to Curling123]

Hi. I take one 2500 biotin daily.

[Curling123 in reply to Jacksc06]

Thank you. Doesn’t interfere with treatment I suppose.

[Jacksc06 in reply to Curling123]

Not in my case.

[Vinweesel2023 in reply to Jacksc06]

Thank you

[Zoy2004]

hi

Autumn is not only the falling leaves season but hair too, I started taking collagen powder in my coffee type 1,2 and 3 and also did collagen professional hair treatment. Hardly any falls now. I have long hair too

[kitchengardener2]

No noticeable hair loss. Although body hair has more or less disappeared. I wonder if this why I feel cold. My hair and nails are both very dry and brittle.

[Vinweesel2023 in reply to kitchengardener2]

Yes the same here. No body hair, very brittle nails and super dry skin. My hair was down to my waist and I cut it to the middle of my back to take some of the stress off of it. Didn't help. I think I am the unlucky one that has had just about every side effect going. Nausea, severe headaches, muscle cramps, heart flutters and now the hair loss. Numbers are great but I feel like crap. I have been told that I will be on this stuff 2x's a day for the rest of my life.

[Katie-LMHC-Artist]

I’m on Acalabrutinib and have not had that side effect. Have you had your thyroid checked? My sister has issues with her thyroid which has caused some hair loss. This is just a thought. Take care!🥰

[Vinweesel2023 in reply to Katie-LMHC-Artist]

Doc checked my thyroid and it is good.

[LeoPa]

I haven't got much hair 😉 but I have an advice regarding low iron. Consume heme- iron rich foods frequently (these are animal based and the iron content is much more bioavailable and absorbable than in plant based non-heme iron containing foods). Do not mix these foods with calcium (including dairy) and coffee because they hamper iron absorption. Find good quality nettle leaf tea and drink a cup everyday. See if this helps. If it doesn't your doctor will advise what next.

[amberhead]

I am also experiencing this on this medication, you are not alone!

[Curling123]

I am experiencing the same after one year on Acalabrutinib. Brittle hair, very fine, breakage. I use a special shampoo and have ordered a serum to try. Will try taking a biotin as well. It is not considered a side effect of Acala but it appears more of us are experiencing thinning hair loss. It will take a few months to know if the shampoo and new serum works. I am hoping it just resolves itself eventually like many side effects have with time.

[Curling123]

I have low iron as well so I am taking 28 mgs every second day to increase my iron. Hoping that works for hair loss as well.

[Vinweesel2023 in reply to Curling123]

How long have you been taking the iron and has your hair stopped falling out.

[Curling123 in reply to Vinweesel2023]

About a month now. Haven’t seen any results with my hair growing or less thinning yet. Guess it’s too soon. Takes awhile to grow. Never had a problem with brittle nails. They grow like a weed. Wish my hair did the same.

[Zia2]

I lost half of mine and don’t and didn’t have low iron. CLL specialist didn’t think it was the brutinibs then but there’s too many of us this has happened to to discount it. Good news is it’s all grown back now ☺️

[Curling123 in reply to Zia2]

Are you still on Ibrutinib or other treatment? A short side effect?

[Zia2 in reply to Curling123]

No I haven’t been on it for two years. Side effects were too much while working full time.

[Vinweesel2023 in reply to Zia2]

It seems according to the responses hair loss should be listed as a side effect. The doctor told me one of the first worries I had about losing my hair was that I wouldn't.

[Zia2 in reply to Vinweesel2023]

I agree! My gums used to bleed spontaneously years ago before treatment and CLL doc said no to that as well (as a symptom of CLL) and now I’ve seen it listed as a symptom. We’re all so different so maybe there’s still much to learn. I had no dental issues then and went regularly back then.

[Zigster49]

My hair has finally stopped falling out (other than at a normal rate) after 5 months. It was accompanied by intense scalp itching. I have changed to an ultra hypoallergenic shampoo (Exederm) and only wash my hair every 7 to 10 days. I can do this because my once “oily” scalp and hair have completely dried out. One possible explanation for my experience is that since starting Acalabrutinib I have developed an abnormal number of allergies.

[Eedew]

I had hair loss after 3 mos of starting Calquence, however it was the same time frame post Covid. Most of that has grown back as I have 3-4 inch crazy hairs framing my face. I feel it was a post Covid reaction more so since I know many people that lost hair in the same way 😩

[Curling123]

reaction to Covid or vaccines?

[Vinweesel2023 in reply to Curling123]

I have not had covid and refused the vaccine. Not too happy with the oncologist I have as she seems to have an excuse for everything except side effects to the drug. I have been on Acalabrutinib since March of this year and the hair loss just started a month ago. My brush is full every time. I even took a bag of hair to show her and she says it is low iron. So I have added iron to my daily list of supplements. Hoping this doesn't last long and according to some of the replies it seems to pass.

[Curling123 in reply to Vinweesel2023]

You are fortunate not to have had Covid and not vaccinated. Your Immune system must be functioning rather well. I have had it twice even with all the shots. Wishing you well and that our iron supplements work wonders. Want to colour my hair, but scared it might fall out completely.

[Curling123]

thank you. It seems the oncologists stay hard and true to the drug side effects. Hopefully it is low iron as I have and that the iron supplements do help us to remedy the hair thinning.