I’ve had cholinergic urticaria since childhood but it was never really noticeable; the occasional itch with spicy food, brief hives every summer or so without an itch etc. However, about 4 years ago, my CU went into second gear and the following year, third gear etc.
It was initially controllable with antihistamines, then steroids, but now it’s uncontrollable. As of last year, it only itched when I got hot from exercise, a heated room, sex etc. As of a month ago, it had progressed to itching with laughter, vomiting, anxiety, any form of physical activity, and I began to experience exercise induced shortness of breath, kind of like when I had bad asthma as a kid.
This month though, things have gone into overdrive: I get nausea and vomiting, scalp itching (my head was never affected), itchy after showers, itchy when about to #2 in the bathroom and now dermatographism. That’s right, when ever I scratch, I’d see a nicely hived outline of my scratch.
I immediately went to a doc and started cyclosporine for the past 10 days now. I can now laugh and stay in a hot room but I still cannot exercise for long without symptoms(I tried today, no luck). Basically I know I’ll have to try maybe steroids with the cyclosporine to go into remission as the cyclosporine isn’t enough on its own (I’m on the highest dose).
My question for those seasoned veterans of this disease out there: Have any of you noticed a progression like mine in which you started developing other forms of hives? What drug remedies have you tried that worked?
Note: I have tried elimination diets, humidifiers, saunas, sweating through the pain, showers without soap, hypoallergenic laundry detergent, antihistamines and steroids to no relief.
Sorry for the gory details, but I guess I needed to vent a little. Please feel free to write whatever. Every comment helps.