Essential thrombocythemia (ET) and breaking out in hives: What helps?

Posted by sandy1959 @sandy1959, Feb 25, 2023

I was diagnosed with ET 2 1/2 years ago. I am on 500mg of Hydroxyuria a day and 1/2 a baby aspirin, and that keeps the platelets at acceptable levels. I take a Claritin daily for itching, About 3 months ago I started breaking out in hives. The doctor put me on Blextin. Nothing is helping. I get them on legs, arms, feet and hands. Does anyone have any advice?

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by sandy1959 @sandy1959, Hives are fun but not part of myeloproliferative neoplasms (MPN) but I have cold induced urticaria since childhood I would be covered in pink Calamine lotion all the time, witch hazel, Aloe vera , Diphenhydramine (Benadryl), Banana Boat sunscreen (this help me), steroid treatment creams, hydrocortisone creams, Epsom salt or baking soda baths , also oatmeal, raw potatoes treatment. Fexofenadine (Allegra), loratadine (Claritin), and cetirizine (Zyrtec) or allergy medication, BUT YOU HAVE TO FIND THE RIGHT SOLOTION FOR YOU! We are all different, what works for me might not work for you! Asked your doctor! Talk to family members with hives. Good luck my friend, feel better soon.

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I’ve had ET for several years with a lot of itching like you. I was prescribed Triamcinolone Acetonide Cream USP 0.1% and it worked quite well. I still get itchy arms but not very bad. Hop this helps.

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@raremiracle2

by sandy1959 @sandy1959, Hives are fun but not part of myeloproliferative neoplasms (MPN) but I have cold induced urticaria since childhood I would be covered in pink Calamine lotion all the time, witch hazel, Aloe vera , Diphenhydramine (Benadryl), Banana Boat sunscreen (this help me), steroid treatment creams, hydrocortisone creams, Epsom salt or baking soda baths , also oatmeal, raw potatoes treatment. Fexofenadine (Allegra), loratadine (Claritin), and cetirizine (Zyrtec) or allergy medication, BUT YOU HAVE TO FIND THE RIGHT SOLOTION FOR YOU! We are all different, what works for me might not work for you! Asked your doctor! Talk to family members with hives. Good luck my friend, feel better soon.

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Good Morning. Are you sure there is no correlation between itching, hives and essential thrombocytosis? I find my body temperature, night sweats, hot and cold swings accompany the itching and hives. The fatigue also causes outbreaks. I am seeing an allergy specialist this week, will keep you posted😊.

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@sandy1959

Good Morning. Are you sure there is no correlation between itching, hives and essential thrombocytosis? I find my body temperature, night sweats, hot and cold swings accompany the itching and hives. The fatigue also causes outbreaks. I am seeing an allergy specialist this week, will keep you posted😊.

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Hi @sandy1959, actually itching is one of the most commonly reported symptoms of essential thrombocytosis. Hives can be secondary to having cancer from medications, stress or the cancer itself causing a histamine response because the immune system can be hyper activated.
There are, of course, conditions such as thyroid disruptions, allergies, etc., which can trigger the response.
Hives are awful! I never had any until my medical odyssey with AML.

It will be interesting to hear what your allergist has to say about cause…hopefully you can get some relief! Have you kept a little journal of when you develop the hives? Can you correlate anything you’ve eaten or meds, what you’re wearing…things like that?

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sandy1959 @sandy1959, Itch (also known as pruritus)
Yes! Itching is 100% sign of cancer look under causes; https://en.wikipedia.org/wiki/Itch
NO! hives is from allergies or autoimmune disease; https://en.wikipedia.org/wiki/Hives
My allergist said hive are not cancer, but the itching is from cancer. I've had itching and hives all my life. Temperature, night sweats, hot and cold swings accompany the itching are part of myeloproliferative neoplasms. Hematologists and allergist looked up and told me yes; polycythemia Vera avoid extreme temperatures. Poor blood flow increases your risk of injury from hot and cold temperatures. In cold weather, always wear warm clothing, particularly on your hands and feet. In hot weather, protect yourself from the sun and drink plenty of liquids. Avoid extreme heat; Avoid hot tubs, heated whirlpools, and hot showers or baths.

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Lori, Volunteer Mentor question;
Can myeloproliferative neoplasms cause or more likely to get allergies or autoimmune disease?
I'm looking for the answer....

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YES! Leukemia causes a person to develop tiny red spots on their skin called petechiae, which signal that they have low platelet levels and broken blood vessels under the skin are the typical cause of red spots.
YES! Sézary syndrome is when the T cell lymphoma turns skin bright red
WARNING SIGN OF SKIN CANCER:
YES! Skin cancer rashes will typically not resolve on their own, unlike those of other skin conditions. As the cancer grows, the size and shape of the lesion or rash will usually change. It may grow into deeper layers of skin and change shape.

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@raremiracle2

Lori, Volunteer Mentor question;
Can myeloproliferative neoplasms cause or more likely to get allergies or autoimmune disease?
I'm looking for the answer....

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I found an article for you regarding MPN and autoimmune diseases:
There’s research evidence of a connection between people with prior autoimmune diseases developing MPNs

Autoimmunity and the risk of myeloproliferative neoplasms
https://haematologica.org/article/view/5667#:~:text=The%20risk%20of%20myeloproliferative%20neoplasms%20associated%20with%20prior,diseases%20themselves%2C%20their%20treatment%2C%20or%20common%20genetic%20susceptibility

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There is a theory that the inflammation that accompanies ET and MPNs aggravates other inflammatory conditions: asthma, allergies, rosacea, arthritis, gout, etc. However, a lot of these conditions also get worse with age and co-morbidities. Trying to tease out root causes, especially in older people, is sometimes impossible. Treating symptoms is usually the strategy docs shoot for.

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I’ve had ET for about 30 years. I don’t get hives but I got real itchy when my cardiologist put me on furosemide. I was prescribed Triamcinilone Acetonide cream USP 0.1% and it worked well. My arms still get a little itchy from time to time but very tolerable

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