A month ago, I went to get a haircut and noticed a bald spot. I didn’t think much of it and assumed it was just a bad haircut. But weeks later, I realized the patch was growing.
I went to the dermatologist, who diagnosed it as alopecia areata. I received a shot, and I think the hair is regrowing, though slowly. I shaved the lower part of my hair and tried a fade to see if it would look better. It does, especially when the haircut is fresh.
My main concern isn’t the alopecia itself; it’s whether Acalabrutinib could be causing toxicity in my body. My oncologist assures me that alopecia isn’t related to the medication, while my dermatologist says it’s an autoimmune disorder with no clear explanation.
I don’t think it’s stress-related, but it’s possible. I read on some blogs that others have experienced alopecia and skin issues after COVID boosters. I haven’t had more than two boosters a while ago, but I did have COVID two months ago. So here I am, trying to understand why this alopecia happened and if it’s a sign of something more complex in my body. All my routine tests from the oncologist came back normal. Any thoughts?
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maresba14
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hi….like you I’ve gotten mixed comments from different specialists about whether meds can cause a certain issue, so one has to decide from self research if one has that option.
You may be too young for a possible med called finasteride used to help BPH symptoms, but it apparently aids hair growth as well from what I read & observe myself….can ask ur doc about it and whether on W & W or having treatment makes a difference?
I would forget finasteride right away. Apart from killing my libido, causing weight gain making me ravenously hungry, causing retrograde ejaculation which is not fun, it is said that in a very small number of cases it can trigger an aggressive prostate cancer variety. You know, Gleason score 9 or 10 which kills you in no time. When I was reading about it I thought to myself I had never heard a crazier idea than to take this medication for reasons of vanity AKA hair loss. I was really happy to get off this medication after 2 years and I hope that I will never have to take it again. I would rather shave my head and whatnot for the rest of my life then to take this medication for no good reason.
Whether listed as a side effect on the label or not, btk drugs have been known to cause fingernails to get brittle and cause hair changes. My hair thinned with acalabrutinib and became more wiry and curly. I have not seen it cause alopecia as you describe, but it sounds plausible.
Insofar as it being caused by covid booster, I do not think there is an affliction known to mankind people do not blame on covid boosters. It seems if anyone had any health issue within a month of their booster, the booster caused it. Thats not to say a booster might have that effect, I dont know. But people have been having unexplained bouts of alopecia long before covid boosters.
Could a btk drug like acalabrutinib cause problems we do not know about that manifest later? I think so. We know btk drugs, among other things, can trigger afib, cause stomach issues and make changes in our fingernails and such. Its therefore reasonable to be concerned that long term use of btk drugs might cause other problems down the line.
Unfortunately, this is a risk most of us have to take. Virtually all cll meds have side known side effects. The newer drugs may have unknown long term side effects as well, time will tell. That said, the long term effects of untreated cll are well known, they lead to an early death.
FWIW, I have been on btk drugs for over five years now and am doing quite well overall. In comparison to the harshness of so many other cancer drugs, btk drugs have very mild side effects for most, I am grateful to have them.
Due to the concerns you express, that btk drugs can have long term effects, I have had discussions with my doctor about strategies to get off cll meds for a break. I think thats very possible for me. In the meantime, I dont worry about the possible effects, I dont have any other options at this time and I try not to worry about stuff I cant change. I already tried adding venetoclax, but I couldnt tolerate it at all.
The fact your hair is growing back makes acalabrutinib less suspicious to me as a cause of your hair loss, but I am no expert and am only guessing. I dont think your doctors know either I had a bad rash for a while and my dermatologist told me it’s very difficult to pinpoint a cause for many skin issues we get. Hopefully your hair returns to normal. My hair was quite long for a while, I ended up having to cut it short due to the changes and such.
I agree with cajunjeff and ChattahoocheeBoy , in general there are many curious things about how CLL and the targeted treatments affect each of us differently.
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IMO (no medical training) I hear the CLL experts struggle to explain how our immune systems are disturbed by our CLL. Many of us have skin and hair issues that could be autoimmune reactions ( our immune system attacks some part of our body that it should NOT).
Other CLL patients see our targeted treatment amplify the autoimmune like effects. Some doctors dismiss those vague associations that don't have strong medical proof, others admit that a connection may be possible.
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I'm convinced that the BTKs have thinned my formerly luxurious thick hair, and I blame Venetoclax for turning my dark salt & pepper hair to pure silver in less than one year. But there is not enough evidence to prove either one.
I have years of biopsy test results on my skin blemishes that can only confirm that too many T cells and B cells are present in my skin (dermis), but the doctors disagree on why those white cells are there.
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I hope you can find a distinct answer to your skin and hair issues, but I fear that you will never get a clear diagnosis or cause.
I've not heard of an association between covid vaccination and hair thinning, whereas the association between covid infection (a vascular, inflammatory, beastie) and subsequent hair thinning or baldness is widely described..If I could, I'd get 2 rounds of Novavax covid vaccination - a variety of antibodies may help better eliminate any covid viral persistence, whilst also protecting from future infection.
Me?
Reckon my balding head saw accelerated baldness post covid - just the illusion of a head of hair remains thinly and at the edges.
..therefore I'd run with measures that aid blood vessels, energy metabolism and peripheral circulation, including antioxidant related..
My list:
Good nutrition first and foremost, of healthy fats, nutrient dense foods and reduced sugar and processed foods - then I take these with some regularity - a multivitamin (without iron, where women may have advantage of iron) with trace elements; maritime pine bark (pycnogenol is the fancy ££ version); eye vit with astaxanthin; magnesium citrate/glycinate/taurate (better absorbed than many pharmacy versions of oxide, hydroxide or sulphate); vitamin k2; ubiquinol; or I may take a vitamin B complex of methylated b vitamins (better absorbed), and I eat some liver for vitamin A.
None of my vitamins claim to be mega doses and I learned to read the small print; if label doesn't declare formulation detail it's a bad sign.
I don't massage my scalp much, and standing on my head would land me with injuries! ..but they can help that circulation.
If it's autoimmune, alopecia.. covid infection is linked to complex autoimmune outcomes, and that's into the realms of luck and optimism, but I remain glad to have done a food exclusion diet at age 46, which identified egg allergy - eliminating egg from my diet has greatly decreased inflammation in my body (I had an eosinophilic inflammatory condition, now in abeyance), which can only be a good thing.
I started in with Alopecia Areata at age 35. Dermatologist said autoimmune issue, many times brought on by stress. It stayed with me for about 15 years, with each outbreak being less severe than the previous one. Have not had an outbreak in over 15 yrs.
Fast forward to 2017. Started drug trial with Ibrutinib and Venetoclax. Had the nail problems more than the hair issues. Hair did thin and as stated above, the new hair came in grayer and more coarse and curly. Have not had any Alopecia spots at all.
If this started along with your CLL drugs, it could be your autoimmune system responding to the stress of the CLL itself and the drug you are taking for it rather than the drug itself. Our bodies deal with stress in different ways. Drug related yes, but maybe not drug specific? The stress of any new strong drug on our body could be enough to cause many types of stress related issues. Stress is not always manifested in ways we can “feel”, like anxiety or nerves or jitters. Sometimes it works inside us causing theses other things. Hang in there and you are lucky you can try the “fade”. I couldn’t do that!
Hello, Maresba14. Thank you for posting about this! If you lock your post, you may get more responses.I have Alopecia Areata also. Diagnosed just before CLL was found during a yearly physical. Palms of my hands are constantly irritated and peeling. Steriods, creams, lotions-Nothing helps either issue.
I'm guessing the body goes into overdrive trying to fight the cll. One inflammatory process leads to another and eventually, the immune system doesn't know which cells are to be protected or killed.
I do think Acalabrutinib could be the only, or a contributing cause, of hair loss. In fact, I discovered Health Unlocked when I was searching the internet for a reason as to why I was losing so much hair, and I found that others on Calquence had the same problem. In my case, I lost about half the volume of my hair, and had intense scalp itch, over approximately 6 months. It gradually stopped and has now grown back (a year later). I took heart from the postings of others on this site that it was a temporary, if dismaying, effect of the drug.
I did lose hair after my first (awful) covid infection but it grew back. I am on Calquence, 4 years now, and have noticed a weakening of my hair and lots if shedding and breakage.
I now wash and dry my hair gently, use a comb (from the tips, slowly working up to the roots) and have a silk pillowcase to limit friction as I sleep. The shedding is markedly better so I think the breakage must be improved too.
I have recently cut back (with Consultant’s approval) from 2 Calquence a day to one with no affect on my ‘normal’ blood results so am about to stop for a break, so we will see.
Cajunjeff - we will have to compare notes on our ‘off Acalabrutinib’ progress.
Hi, this could be unrelated but... my hair started falling out when I went on Lipitor (atorvastatin) for cholesterol. My doctor said that it was not a known side effect (tho the internet disagrees), but my hair stopped falling out the day I stopped taking it. Now I take Crestor (rosuvastatin) instead with no issues. I just mention this in case you happen to be taking atorvastatin for cholesterol as well.
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New maybe unrelated symtom
Looks like WW is finally over
feeling down and sick
7 Covid vaccinations 
They won’t go away!
