Chronic Idiopathic Urti-whaaat? (with pics)

Chronic Idiopathic Urticaria- fancy words, right? Well let me tell you, it is one of the worst skin conditions I have EVER experienced in my life! Basically they’re hives, with no known cause that lasts for who knows how long (> 6 weeks though). My episodes have been occurring almost daily since October 2018. The size of my hives range from pin point to as big as a half dollar, sometimes even meshing together to form what looks like a continent on my skin. It is/was CRAAAZY and drove me insane, ha!

My earliest recollection of hives, were tiny, raised, red spots on my hips back in August 2018. One day those tiny spots turned into quarter size spots and spread to both of my thighs. They were so itchy, it kept me up all night. I saw my dermatologist the next morning and was prescribed oral steroids and steroid creams to help with the inflammation and itchiness. He mentioned that it could be an “allergic reaction” to something, BUT thing is…I hadn’t changed a thing about my daily routine, diet, etc…So I took the steroids and switched over to all the hypoallergenic stuff (like body wash, laundry detergent, etc…), but nothing. The steroids helped a little, and I thought I was in the clear. WARNING: PICS AHEAD- I’m sorry in advance if they offend anyone…just wanted to share my experience with you all and hopefully help in some way.

Pinpoint hives

I.was.wrong!…Symptoms came back with a vengeance starting in October. (I should also mention I have Lupus too- a story for another time.) I broke out in hives all over! Back , stomach, legs, arms, hands and feet! The itch was so intense, they burned, stung and felt like fire ants were biting me from within. Couldn’t get any sleep…literally up for at least 48 hrs straight at times!! Off to the PCP I go, got prescribed an antihistamine and steroids and requested an allergy and autoimmune panel be ordered. (The autoimmune panel was a suggestion I got from one of my MD friends, so I thought, what the heck, “I’ll ask for that too”).

Gigantic hive!
Hives on leg.

Still itching- allergy panel came back with a slight reaction to cow’s milk. (Tried no dairy for a couple of days-no difference). And autoimmune panel came back positive with an ANA titer of 1:640.

Hives all over!

I was then referred to an allergist, told them my story, and was ultimately diagnosed with Chronic Idiopathic Urticaria (CIU). I was then prescribed H1 and H2 blockers, in addition to hydroxyzine. If that didn’t work in 2 weeks, then I would be prescribed Xolair, which is an injection that you get every 4 weeks that is approved to treat CIU. Two weeks went by with no relief, so Xolair and cyclosporine were started. So far, I’ve had 4 shots and am still having breakthrough hives. My allergist told me that I’m the first he’s seen that hasn’t responded to anything yet. BUT it could be because my immune system hates me and is fighting my body. (I was also referred to a rheumatologist)

Today, I am still taking all the medication mentioned above, in addition to plaquenil, dapsone, doxepin and a 30 day course of steroids. Hoping something starts working because this itch is slowly killing me.

I do have to mention that ever since my hives started, I’ve tried ALOT of things to help with the itch and will share some “itch relief” suggestions in my next post.

If you want to learn more about CIU, I found these sites helpful:

AND…if you ARE experiencing any of the above…seek some medical advice. It could be CIU.

Til next time. 🙂