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People with ET who are on hydroxyurea -

I have ET JAK 2, dx in March 2025. Platelets were 900K and are now 530-620. is OK with that. 2 baby aspirin daily and 500mg/day of hydroxyurea

OK, 3 months after starting hydroxyurea, I started itching like crazy; back, chest, arms mostly. It got bad. Tried all anti-histamines and OTC topicals. Caladryl helped me most, but after a month of putting on all those places, I got toxic symptoms: Drowsy daytime, insomnia, etc. Saw dermatologist, who put me on Rx triamcinolone cream 2% to use 2x a day on affected areas. Well, I got the same toxic effect people often get with steroids, and this was like Kenalog. Sleepy daytime, insomnia, etc. VERY depressed about this. My upper chest has a raised, excema-like rash/dermatitis, small, tiny, itchy bumps on arms, back & upper back itch - I scratch - I itch more. My oncologist is hesitant to cut back on my hydroxyurea, and the other options for NPN's - Jakafi, Interferon, etc. are really for PV patients and would not help with ET very much.

So I am in "itch-scratch-itch cycle! But the itching is so intense sometimes I HAVE to scratch it or tie my hands behind my back. I *know* about 50% of ET patients have itching, and about the same percentage who take Hydroxyurea also get it. Caladryl and other OTC things like Sarna anti-itch have Proxamine in them, and if I apply to large areas of skin, I get the same toxic effects.

Has *ANYONE* with ET, or frankly any other blood cancer, or having chemo treatments, found a doctor who solved their itching without issues, as I have had/do have from the OTC or Rx prescribed things mentioned???

If you have had this issue, I would sure like to know how you deal with it or moderate it so you can sleep at night and be alert during the daytime. I also have mild night sweats, but they don't cause me insomnia or rashy, tiny red bumps/and intense itching. They are just irritating.

Photos attached. Dried clear Caladryl (like Calamine lotion) gel shows, but I do not take it now, unfortunately, because it helped 2-3x a day.

Many thanks in advance.

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Replies to "People with ET who are on hydroxyurea - I have ET JAK 2, dx in March..."

@circawdm … Try Aloe Vera Gel. I got mine on Amazon and it is in a plastic bottle made by KinRose Care. Good luck my friend!