I have CIU. Have had it since last March. (2017). I had gotten a pretty severe flu that moved into a bronchial infection (in mid January 2017) when I was starting to feel better, here came the hives. They were awful. Started on my head, face & spine then just spread everywhere after that. My hives are angeodemia hives. Large, deep and raised. They can be extremely painful. I especially get them horrible on my feet. (Bottoms) Makes it difficult to even walk when I have a flare up. I sought out many doctors at first that didn’t know crap & just blew me off and stuck me on more steriods that were making me insane. (No sleep, very irritated ect 3 ER visits. I got anaphylaxis from the swelling twice. My face was completely deformed. Of course at first all the steroids, Benadryl, creams, oatmeal baths, all antihistamine blockers, dioxipen and more crap I don’t know the names of off the top of my head. I finally seen an amazing allergist who ran numerous tests. I really wasn’t allergic to anything that would be causing this severe of a reaction. (I had 4 mild allergies to a few grasses and trees.) Nothing that concerned her or I.). Also no auto-immune diseases either.
She started me on the XOLIAR shot last March. (The 28th, keep in mind my 1st outbreak was the 2nd of March.).
It was awesome. Within hours my hives were so much less intense, within 3/4 days they were gone. I have been continually getting these shots every month or two since. I have awesome insurance, so this this far I have paid a very small co-pay & that’s it.) I have worries that it may not be paid for forever though. This shot is extremely expensive. 🙁. I have been tested for basically every auto-immune disease out there. I am a healthy person in general. Active, busy, athletic ect.I am extremely susceptible to upper respiratory infections though. This winter (Nov-Jan) I got a rare form of mycoplasma pneumonia. It about did me in. I failed my breathing tests and everything. And here I am STILL fighting CIU.
Today I have them on my feet so bad I can barely walk. I got a XOLIAR shot 2 days ago, it hasn’t fully kicked in yet. I also take a daily Zyrtec. So I guess I am wondering if anyone else in this group has had a similar situation as mine? A bronchial infection/respiratory infection/pneumonia that spun them out of control and into CIU.? And also I am wondering if the XOLIAR isn’t working as great as it did in the beginningis it possible for my body to build up a “tolerance” to it.? Any advice or help is greatly appreciated. God Bless you all who suffer from this maddening disease. 😓😥😰