Itchy knots under skin: I've been experiencing... - CLL Support

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Itchy knots under skin

scorpio74944 profile image
6 Replies

I've been experiencing painful, itchy knots on my arms and legs that turn to blisters. Even worse when I scratch them. It's the same experience I have when I get mosquito bites, but I have not been exposed to any insects or allergens. Anyone else ever have this problem? My doctor just gave me a steroid cream, but that doesn't help.

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scorpio74944
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6 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

Can you supply photos of the knots before you scratch them and after they turn to blisters? Also, what kind of blisters; fluid or blood filled?

scorpio74944 profile image
scorpio74944 in reply toAussieNeil

This is the most recent. I have a couple of spots I can feel coming on, but you can't see them yet.

Most recent, minimal scratching, been using steroid cream.
lankisterguy profile image
lankisterguyVolunteer

Hi scorpio75944,

-

I've had problems with my skin since 2006, and treatment for my CLL has usually made it worse, Ibrutinib was the worst and Venetoclax was 2nd.

Steroid creams only worked for a few days. I've had many dermatologists take biopsies and the pathologists that examine them rarely have a definitive diagnosis. They suggest psoriasis, eczema, drug reactions, etc.

A top research pathologist Dr Cynthia Magro at Weill Cornell NY Presbyterian weillcornell.org/cmagro has identified excessive T-cells and B-cells in the dermis layer of my skin, but the cause is not well understood.

We have found that photo therapy- a light box with narrow band UVB rays en.wikipedia.org/wiki/Light... will reduce the excess cells and control the itch extremely well. Outpatient clinics are usually available where Psoriasis is treated.

The NIH has published statistics pubmed.ncbi.nlm.nih.gov/174... says Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.

-

Len

scorpio74944 profile image
scorpio74944 in reply tolankisterguy

Thank you!

hopefulbunny profile image
hopefulbunny

I find that using aloe vera helps with various skin problems.

beenthere2X profile image
beenthere2X

You might ask your doctor to switch you to Calquence (Acalabrutinib) or Brukinsa (Zanubrutinib). They are more targeted.

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