My Hivey Evolution

Hey. I just wanted to say “Hi” to everyone here and introduce myself. I am Stefani, 53 years old, and I’ve had hives for 23 years (onset at age 30).

They started out as exclusively cholinergic (only heat/exercise) and, ironically, shopping related (the stress of trying on clothes, one of the many reasons I hate shopping). Over time, and with hormonal change, they are worse.

Now they come out of the blue sometimes, like today. Ever increasing frequency, and now not just heat. Just for no apparent reason. Last about 45 minutes, insane itching. I don’t take antihistamines daily because my thought is why take something all the time for a problem that is intermittent.

By the time I’ve got an outbreak, it’s pretty much too late for antihistamines to help. But I do take them prior to exercise; two Zyrtec and a Benadryl don’t stop them, but they significantly reduce the itching. Interesting, I have a history of what they called “recurrent pneumonia syndrome” as a kid, and still get bad bronchitis every time I get a cold.

It’s clear that my mast cells overreact, and produce tons of mucus. So I think there is a strong connection between that and the hives. I also have anti-phospholipid antibodies (without anti-phospholipid syndrome, no history of clots), and elevated IgE (10x normal, but within the range they typically see with asthmatics). I don’t have dry asthma but I believe my mucus production with viral challenge is a relative of asthma. I have a slightly elevated CD4 T cell count and complement 50.

These are all pieces of a puzzle but no doctor has ever named what is up with me. Also polyarthritis. Hands, feet, neck. Family patterns of various immune mediated disorders – two relatives died (at an advanced age) of idiopathic pulmonary fibrosis, there is asthma, psoriatic arthritis, grandmother with severe rheumatoid arthritis, cousin with MS, mom with interstitial cystitis, sister bipolar. All of that has been linked to inflammatory stuff.

Anyway, I have no real questions I just wanted to reach out and see if any of this resonates with anyone. I think we all have to “self hack” because doctors are so unhelpful with this disorder. It is deeply distressing to have physical activity trigger such intense itching. It’s not the hives that bug me as much as the itching. Hopefully I will learn from this site.

Thanks,

Stefani