Acalabrutinib Ibrutinib sun/tan

[Mik_]

Hi, Please everyone who is on ibrutinib or Acalabrutinib and who has developed allergy reaction to sun or just have normal tan please respond.

Thanks,

Mik

[lankisterguy Volunteer]

Hi Mik_,

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I'm sorry we have not generated a response for you in 9 hours. Your profile indicates Marginal Zone, Mantle Cell and Difuse (large B-cell?) Lymphomas, so you cancers are not common among our members that mostly have CLL.

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There have been 25 other posts that include the terms "Sun reaction" you may want to peruse them to see if any of the replies and descriptions match your issues.

healthunlocked.com/cllsuppo...

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You may also note that sun reactions are more common with several antibiotics, are you taking any?

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I have always been sensitive to sun, and burned often but rarely developed any tan. Since my CLL diagnosis that sensitivity has become exaggerated to where strong sunlight immediately causes pain on my upper arms. While I was on Ibrutinib my skin problems became unbearable.

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Len

[Mik_ in reply to lankisterguy]

Thanks Len. The initial diagnosis is not very critical because both Ibrutinib and Acalabrutinib make a lot changes in skin that I learned from conversation with Onco-dermatologist the mechanism is not clear. It is why I try to get personal experience. I developed recently terrible skin rush and itching from face to hands and leg, however, besides sun we also had terrible smog over last 25 days. Cream and Zyrtec helped me and it practically mainly resolved over two weeks. However, if tan is not possible to develop under these medications it is a real problem, especially in CA. I actually wonder if anybody developed tun while under Acala/I -brutinib. And that skin related issues they may cause.

Best,

Mik

[Davidcara]

On Ibrutinib for six months. Try to stay out of sun but, notice I burn/turn red super East now

[Davidcara in reply to Davidcara]

Super easy

[Mik_ in reply to Davidcara]

Thanks for response Davidcare. Can you please clarify did you developed tun constant after your skin turn red or you just developed inflammation, rash and itching?

[Davidcara in reply to Mik_]

I just fine I sunburn very easily now, compared to before starting ibrutinib.

[PaulaS Volunteer]

Hi Mik,

I've been on Ibrutinib for nearly 3 years. After a few months on it, I got nasty rashes on my face. Eventually they went away, but I needed a steroid cream to calm them down for a few weeks then reduced the dose of ibrutinib so it's hard to know if the rashes would have faded without that reduction.

I also cannot tolerate sunshine very well (since taking Ibrutinib). That problem has not gone away with time or dose reduction. My skin goes red very easily but it's not just that, I also get headaches, nausea, body aching if I'm in the sun for long. Sometimes it's a delayed reaction and I feel OK at the time but feel ill later in the day. I've now adjusted to avoiding sunlight whenever possible. A big nuisance but easier to do in England than California...

Long before starting Ibrutinib, I used to take daily Lansoprazole (for stomach acid), then I got a similar bad reaction to sunshine. Doctor said it was a rare side effect of Lansoprazole so it seems I'm one of the unlucky ones re sunlight and medications.

Paula

[Mik_]

Hi Paula, thank you for your reply. I pretty sure there is some personal tolerance but I think the mechanism how x-brutinib causes the photosensitization is very strong and universal for everybody. I have easy perfect tun before and never have my skin burn red under sun unless I stay over an hours under Pacific Sun (without cream) that is much stronger compared to Atlantic. I tried to clarify with Onco-dermatologist if there is possible to get some tun and it may decrease skin photosensitivity and make life a little bit easy. However, she didn't know the answer and I haven't found any relevant publication. I did google and pubmed. I perfectly understand the itching mechanism and follow up rush - it is very close to my area of research, but I cannot find any info about Ibrutinib skin photosensitization or skin structural changes. It will interesting to hear if anybody manage to develop a tun and if it may prevent or decrease sun evoked effects.

Mik

[NjArtist4321]

Did you read the warnings for this drug we all take? There is a significant risk of developing a ‘primary skin cancer” while taking this drug. Get out of the sun! No more tanning! Wear a hat and sun mask. Try coolibar website. Hats up to XXL and non covid masks. I don’t know what rash that is.... but benedryl protects your skin. Can stop a rash from spreading. Can stop a rash from even happening.