ET Jak2 mutation itching

Itchy skin comes with ET. As others on this forum have suggested: clean up with a washcloth, rather than a shower or bath, as hot water seems to really ignite the itching. Make it a priority to find lotions or moisturizers that work for you.

And you may discover that wearing cotton or linen, rather than polyester fabrics, is more comfortable. I also chose loose-fitting clothes whenever possible.

It's believed that the mutated proteins that drive our ET set off an allergic reaction, of which itching is one part.

The best tip of all is -- once you've gotten your oncologist's approval -- is to take a daily antihistamine. For me, this not only tamps down the itching, it makes breathing easier. Congestion is another part of our allergic reaction. Our abnormal platelets are like pollen to someone suffering from hay fever.

Hope this helps!

ET jacks up histamine production. I'm not sure researchers know why this is part of the disease profile, but it causes itching. I take Claratin daily. I keep Benadryl caps and hydrocortisone cream or gel handy. Ask your oncologist about these before you take them.

Sometimes just applying cold compresses to an itchy or inflamed spot offers relief.

I know some folks have tried an antihistamine diet, but it is quite restrictive. You can find a lot of lists of high-histamine foods online. Mostly it's citrus, tomatoes, strawberries, things with yeast (bread), anything aged (cheese)--basically stuff people love.

I'm starting on my 17th year with ET-CALR. I'm 70. The disease is stable with HU, but my tolerance for dust, scents, pollen, mosquito bites, etc. are getting lower. I have a good air filter, I use fragrance free stuff soaps, cleaners, laundry, shampoo, etc., and I have no carpets (just rugs I can wash). If environmental pollutants set you off AirNow.gov can give you air quality info by zip code (assuming this service from NOAA is not on the chopping block).

I do have cats, but they're here to stay. Your vet can give you spray to help reduce their dander load.

Eek, I'm getting itchy talking about this! 🙂

My suggestion is to make small changes over time to see what works.

Thank you for the explanation about the histamine. I do better when I know the reason why something works.
I experience itching all over my body.
One thing I did find helpful, was after my warm shower I rinse off with cold water. That dramatically reduced the itching. I don’t know the science behind that, but it seems to work – – for a few hours.
Maybe it’s the shock value😂
This method does not appeal to me in the middle of the night though😂

Good for you, finding that solution!

My Dr. told me to take 1/2 Body Lotion & 1/2 Coconut oil & yes it works