Hi All – Sharing my story if it will help others. The last time my life was normal, I was in Arizona, walking around in 90 degree heat, climbing some peaks, and enjoying a spa. That was early October, and within weeks after coming home, I started to experience what later would be diagnosed as cholinergic urticaria. I played tennis competitively twice per week, before all this began.
I went from having a “prickly” patch on just my lower back with no visual symptoms, to now having painful hive-like welts all over my body whenever it heats up. All in just 3 months.
If I’m lucky I can go a day without breaking out; however, if I walk fast my feet can break out (with even light socks on shoes). If I wear a long sleeve shirt in a hotter room my arms will break out. If I do any activity (vacuuming) my entire body will break out. It takes 1-2 minutes to start, and if I ice myself it can take 1-2 minutes to go away. It’s that fast to come on, and that fast to go away.
Doctors seen: Primary care (prescribed steroids), Neurologist (did sweat testing, also did biopsies and checked for Neuropathy – both were negative), Dermatologist (biopsied me when I broke out), and Allergist (doctor that is running point on all this).
- Sleeping: I have to sleep with practically no clothes on, on top of the sheets, in a colder room.
- Eating: I am ~6 weeks into the elimination diet mentioned in the book. Rarely, I will eat something outside of the strict elimination diet.
- Heat avoidance: Short sleeve shirts everywhere, no exercise, no basic household tasks (vacuuming). I carry an Epi-pen in the event I break out and can’t control it.
- Drinking: Only ice water (about 60 ounces a day)
- Medicine: Xyzal 10Mg (in the morning), Zyrtec 10mg (afternoon), Montelukast 10MG (at night), Doxepin 20mg (at night to help me sleep).
- Vitamins: Calcium 1000, D3 1000, Probiotic, and Multivitamin. The vitamins are to help supplement for the restricted diet I am on,
- Environment: Arm and Hammer deodorant, Free and Clear Shampoo, Filtered water, etc.
- Lotion: Eucerin Calming cream at night, typically just on my feet
Injections: I am getting shots of Xolair (https://www.xolair.com/) – 300 mg monthly. They are likely going to up my dosage to bi-weekly. I’ve had 3 shots so far, and my 4th shot will be in a few weeks. This is supposed to help people with cholinergic urticaria.
Net net, things are very bad for me, and I even got to a world known cholinergic urticaria doctor at Johns Hopkins, and he recommended to my allergist that I try Ketotifen.
I ordered it from Canada. It is supposed to help severe CU patients. One month cost me ~$180 with expedited shipping. Normally it is around $150/month at the higher dosage I’ve been prescribed. It is not FDA approved, but widely distributed in Canada and Europe. In the US they use it for Eye drops. I hope to receive it in the next week or so.
As you can tell from the above, I’m on 3 different antihistamines (Xyzal, Zyrtec, and Singular/Montelukast) and that has not knocked this back to a better quality of life for me.
I hope to share some good news after the Ketotifen and/or increased Xolair shots kicks in.
I hope all of you find the solve for this as it is a terrible way to live.