CLL itching

[Romeo22]

I am convinced that my constant itching problem is a direct result of my condition. Itching has increased over the years and now constant . My only relief is alcohol and THC laced Gummies .

All other suggestions would be appreciated .

[gardening-girl]

Romeo22, I see that you have just joined us. It might be helpful if you would tell us something about your CLL journey. Have you been seen by an allergy specialist who could administer a skin prick test? In my case severe itching was caused by food allergies that deveoped as my bone marrow recovered from CLL treatment.

[Skyshark]

I was quite itchy for at least the year before treatment started. Much better now in week 4 of cycle 3 V+O.

[lankisterguy Volunteer]

Hi Romeo22,

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I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, but Ibrutinib really made the rash strongly itchy.

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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. My CLL expert doctor thinks that my refractory HHV6a infection is the cause.

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The common result from a top expert skin pathologist 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 have over 441 postings that mention rash:

healthunlocked.com/cllsuppo...

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And over 1,077 postings that mention skin issues and CLL:

healthunlocked.com/cllsuppo...

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The NIH has several papers suggesting that CLL itself leads to skin issues, as noted here:

ncbi.nlm.nih.gov/pubmed/174...

SNIP: "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.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".

Here is a 2023 article on how the immune system reacts to skin injury or causes autoimmune reactions:

the-scientist.com/news-opin...

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).

daavlin.com/patient/uv-phot...

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I obtained a home unit in December 2020, it's 2 meter/ 6 ft high with 8 special fluorescent bulbs see:

daavlin.com/product/patient...

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The psoriasis & seborrheic keratosis is in full remission and I only need 1 treatment per week - a total of 8.5 minutes exposure to keep it under complete control.

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Len

[cartwheels in reply to lankisterguy]

Wow thanks for this post. Last 10 months I have suffered multiple skin rashes, nodules etc all over at first they say as a reaction to my 6 th COVID jab which has led me to multiple hospital visits to dermatology who thought it was vasculitis caused by vaccine, it's now not as bad and waiting for skin biopsy results from some raised nodules that seem to move around my body from face ,scalp chest back etc . I have been sunbathing using factor 30 and it's made a big improvement although my nodules are still a pain . They tried steroids oral and ointment which helped antibiotics etc . During this time my lymphocytes have risen and they are now keeping a close eye on that . So it might be I'm losing remission from ibrutinib. But your post has been very helpful as this has been far more stressful then CLL itself. I have recently brought a uvb hand held light and experimenting with it . From what I have researched myself uvb light is a big help

[opal11uk]

My husband, who has CLL. came out in a head to toe itchy rash and welts last year, diagnosed by a Dermatologist as Hives, starting to take Antihistime tablets, rash eventually went and in spite of his continued use of these tablets it has now broken out again. This is severe itching and keeps him awake at night. I asked at the time is this was in any way due to CLL and was told no however I have researched 'itching' and it states the conditions/diseases it can be associated with Diabetes, Leukemia to name but two. It lasts several weeks, so with the tablets he was also prescribed a spray body oil, apparently important to keep the skin lubricated. This time he hasn't been back to the medics as they told him last year that there wasn't much they can do. Personally, I think its an allergy from something in the garden as this time it occurred when he was cleaning our the raised beds but I'm no expert.

[deesil]

I have experienced mild itching but the worst is the itchy scalp which is pretty constant. I have no flaking of my scalp and have tried several shampos but none seem to make any difference. The only thing that seems to help at all is washing my hair in cold water or putting a bag of frozen peas on my head. A cool shower sometimes helps with the general itching. I have not received an explanation for the itching but have mentioned it numerous times.

[Hidden in reply to deesil]

I use a anti itch spray...spray it on my hand and rub it on my scalp...much relief...and the doc says not associated with cll...I disagree.

[sportage21]

There is a cbd\thc cream available that I use topically for restless legs. It may be worth trying for your itching.

[Tapps]

My husband has CLL, On Ibrutinib, Unmutated.

Breakout of horrible red, swollen eczema, head to toe. Awful itchy.

Dermatologist put him on Dupexint shots, and high dose steroid mixed with a 16 Oz jar of heavy body cream. Warm short baths with OTC Oatmeal packs. No showers. One antihistamine pill a day.

It worked. Ask your Dermatologist ✔️

[Doggoneit101]

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