Has anyone else experienced frequent infections and itching with CLL?

Posted by kellim @kellim, Nov 4, 2023

I had a respitory infection and took prednisone and Bactrim and started To feel better. Then every time I start feeling better and go out in public, I get sick again. I’m also experiencing major itching& hives on my head and neck.

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Have you been tested for Allergic Contact Dermatitis, ACD? Google the 5 Day Extended Patch Test. I was diagnosed with CLL 23 years ago and developed ACD 10 years after my CLL diagnosis, yet I have never read that these conditons are related. Your itching may not be related to your CLL but to allergies. As you mentioned you've been having issues since taking anti-biotics. I'm allergic to the class of anti-bioticis with sulfa. Also to one class of steroids, the one that has cortisone in it and because of my allergies to preservatives I have only a few grooming products safe for me. Shampoos are very limited, but are available on line. It's
common for hives to be diet related and I assume that goes to medications also. I have a friend who gets hives within a day if she eats strawberries. ACD is also chronic, but I've been itch and rash symtom free because of avoidance of my patch test allergens and plus changing my diet, mainly no more processed sugar.

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This what I found
Many researchers believe it is caused cytokines; chemicals released into the blood by the body's immune system. When immune cells come into contact with leukaemia or lymphoma cells, they can release cytokines at high levels, causing irritation of nerve endings within the skin and thereby a persistent itch.
https://www.leukaemiacare.org.uk › ...
Can itchy skin be a sign of leukaemia?
MORE RESULTS
What is itching like with lymphoma?
CTCL-related itching is particularly vexing since it can start as a small fire and progress into a firestorm. An

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Thx that was great explanation

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I treat my CLL related itch with an antihistamine called cetrine which works brilliantly. For some reason my itch flares up at night time more than day but i find I can keep it completely under control with the antihistamines.

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@kellim

This what I found
Many researchers believe it is caused cytokines; chemicals released into the blood by the body's immune system. When immune cells come into contact with leukaemia or lymphoma cells, they can release cytokines at high levels, causing irritation of nerve endings within the skin and thereby a persistent itch.
https://www.leukaemiacare.org.uk › ...
Can itchy skin be a sign of leukaemia?
MORE RESULTS
What is itching like with lymphoma?
CTCL-related itching is particularly vexing since it can start as a small fire and progress into a firestorm. An

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@kellim, the article was very helpful. Were you able to determine whether the itching you're experiencing is related to your diagnosis of CLL or if it is related to something like allergy? Have you talked to your cancer team about it?

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@nickyh38

I treat my CLL related itch with an antihistamine called cetrine which works brilliantly. For some reason my itch flares up at night time more than day but i find I can keep it completely under control with the antihistamines.

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Our histamine levels are higher at night.

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@colleenyoung

@kellim, the article was very helpful. Were you able to determine whether the itching you're experiencing is related to your diagnosis of CLL or if it is related to something like allergy? Have you talked to your cancer team about it?

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I talked to my oncologist and she said that because our basophils and eosinophils are abnormal and the cytokines are high it causes your normal allergies (hayfever ect.) severe. And itching.

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Oh my gosh. I'm so sorry to hear this but I'm so happy to know I'm not the only one. I've had this for over a year and have been to the dermatologist multiple times who has told me a little to nothing about it although he has shown a lot of concern but I have been diagnosed with m monoclonal protein disease. I believe it's mainly affecting my kidneys right now but I do have the hives and itchiness on my scalp and neck and upper shoulders. It drives me crazy. In the beginning I thought I might have lice because it felt like something was moving but it was my nerves.

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gardening junkie: Thank you for posting that histamine levels are higher at night!
Folks: You may find it helpful to google: "histamine higher at night" for suggestions and further explanations.

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