Itching on Acalabutinib: I am on Acalabutinib... - CLL Support

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Itching on Acalabutinib

JB656 profile image
8 Replies

I am on Acalabutinib and have started itching especially after a shower and when I go to bed.

I get some relief from some antihistamines (Chlorphenamine works and Loratadine and cetirizine hydrochloride don't)

I have tried hydrocortizone cream but don't like using this steroid cream but does help a bit

I have an appointment at the hospital this week but feel they are more interested in my progress with CLL which they say is good

Is anyone else suffering or any recommendation of what I can try?

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JB656
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8 Replies
lankisterguy profile image
lankisterguyVolunteer

I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, but Ibrutinib really made the rash strongly itchy. You could be experiencing the same reaction to Acalabrutinib controlling your CLL and indirectly causing the skin flare ups.

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Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides.

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The common result from expert pathologists that ran flow cytometry on the biopsy, was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.

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Our archives has 500 replies that mention skin issues and CLL:

healthunlocked.com/cllsuppo...

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My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).

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In winter - dry cold weather, if it becomes itchy and bothersome, I use Triamcinolone Acetonide (prescription steroid cream) for 2-3 days then switch to a good moisturizer like CeraVe until the rash is well controlled.

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Len

JB656 profile image
JB656 in reply tolankisterguy

Thank you for the reply

I have no rash or any signs of a rash but the itching is driving me nuts

I will make note of your suggestion and ask my GP for some

thanks

zaax profile image
zaax

yeah me too. I'm on Ibrutinib.

JB656 profile image
JB656

thanks will do and I will try and get some tomorrow

JB656 profile image
JB656

Hi zaax,

The acalabrutinib is definitely doing a good job on treating my CLL but the itching is driving me nuts. I try desperately not to scratch as that only makes it worse, I feel better when cold so I am hoping that as the weather gets colder I stop this itching.

I hope you can cure your itching problem

Regards

John

maggie214 profile image
maggie214

My itching on Acalabutinib became extreme, but Benadryl worked for me. In the beginning I had to take it several times a day, but now I’m down to one capsule at bedtime.

JB656 profile image
JB656

Thanks I will try the Benadryl

vog292 profile image
vog292

Try wiping with medical wipes instead of showering. I use specially large wipes 9x13 inches ," NorthShore Supreme Wipes " which contain a menu of proven skin-supporting and soothing elements. After that I cover the skin with "Welmedix HomeCare PRO Fragile Skin Protective Ointment". (Both available at Amazon etc.)

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