If you've never heard of chronic ideopathic urticaria before, here's a quick overview of this annoying condition:

For no known reason (there are too many possibilities to test), your mast cells think they are fighting an infection constantly. So they keep releasing histamine over and over and over, non stop.

This results in full body hives that are EXTREMELY ITCHY.

This condition continues for anywhere from 6 months to 10 years or more. There's no real understanding of what makes the body reset back to normal.

Treatment is spotty at best. First line is to go up to FOUR TIMES the normal dose of antihistamines (i.e 4 Zyrtec pills per day). Second line is a biologic to try and shut down the signaling that makes the mast cells fire. That's where I am now, about 11 weeks into my once-every-4-weeks double injections of Xolair.

If, like me, that still doesn't shut things down, the next step are immunosuppressants, or temporarily going on prednisone. I've been on prednisone 5 times in the last 8 months. That is NOT good for your body, although it usually completely shuts the disorder down for a time.

So, that's my journey. Thankfully, chronic idiopathic urticaria is not fatal, it's not even dangerous. It's just incredibly uncomfortable and damaging to your quality of life. And expensive to treat (thankfully I have decent insurance).

Adding a hashtag in case other want to share their experiences and their luck with different treatments.

#CIU
#ChronicIdiopathicUrticaria
#ChronicUrticaria

The sound of laughter filled the air at a local family picnic when I noticed Sophie, one of my neighbors, sitting on the sidelines, scratching her arms with visible frustration. #allergymanagement #angioedema #antihistamines #chronicurticaria #hives #skinrash #urticaria

https://priya.health/urticaria/

I had my 5th session of #Xolair a few days ago. 🥳

I'm still not sure if it's helping my #MCAS / #MCAD symptoms, though. I think it might be reducing them?

(I'm officially taking it for #ChronicUrticaria, but more concerned about my scent triggers of perfume & smoke.)

But I have a strange side effect: Instead of running overly hot (as I usually do), I'm *super cold*. It's so odd.

Anyone else experience this?

#NEISvoid