cholinergic urticaria (allergic to heat or cold/hives on temperature change)

[Purple478273]

About 10-15 years ago, I suffered from cholinergic urticaria upon temperature. I recall breaking out in hives if I walked into a heavily airconditioned space in the summer heat, or a took a hot shower in the winter. I was in college and remember getting hives all up and down my legs when wearing knee boots and sweating under them in the winter. I found out details about the condition and learned that it happened upon an abrupt change of body temp 2 degrees c either way and was not uncommon in the early twenties and typically went away, so I didn't worry about it. It did in fact spontaneously resolved after a year or two. I was diagnosed a few years ago with ET, but records show elevated platelets for around ten years.

I did some googling and saw a few things that made me think this could be connected.

Wondering if anyone has had this or heard of it.

Thank you!

[hunter5582]

That does sound very similar to the aquagenic pruritis that some with PV experience. I believe some with ET experience it as well. It is directly related to the deregulation of the JAK-STAT pathway. Perhaps what you experienced is in fact related. Perhaps one of the perfect storm of events in your body combining then resolving as you aged. Glad to hear that at least that one symptom did resolve.

Will be interested to hear if others have had similar experiences.

[KentBee in reply to hunter5582]

Love summer but hate the result. JAK2 positive on Hydroxycarbamide. Haematologist said not related however aI feel it is.

Result of severe heat rash last summer

[hunter5582 in reply to KentBee]

I would tend to agree. To similar to aquagenic pruritis to ignore. We are far more prone to inflammatory conditions with MPNs. Even "unrelated" conditions are related to systemic inflammation.

[EmeraldA]

I think I get this as well. An example would when I go for a run in the cold weather come back home and I break out in hives in my upper legs. I thought it was being in the warm shower after a run but I find if I come home after a run and if I cross my legs underneath where it is warmer hives will develop. 🏃‍♀️🏃‍♀️🏃‍♀️🏃‍♀️

[izzydrc]

I would consider a mast cell disease being part of the problem. They are close to mpns as mastocytosis is a blood cancer and technically an mpn also. You can have both as i do. Histimine causes a lot of issues.