A bit of background on my Cholinergic urticaria. I was diagnosed in 2003. After trial and error, I was successfully treating my cholinergic urticaria with doxepin. The doxpepin began causing me to have problems with depression, so I was switched over to a new medicine. I now take Cholchicine and it works well.
First question: Does anyone have family members with cholinergic urticaria? My 4-year-0ld daughter has always gotten red and flushed when she’s gotten too heated. About a month and a half ago, she had been out playing for awhile and was getting overheated. She ended up breaking out into hives. I got her in and cooled and they went away. She gets hot while sleeping, always has. She woke up the next morning covered in hives head to toe. I took her in to her pediatrician that morning. She was diagnosed with heat hives and prescribed a combo of Claritin and Zantac. It’s working for her.
Second question: Has anyone had high levels of Tryptase? About 3 weeks ago, I went in to my Allergist for my Cholchicine refills. While I was there, I told my doctor about my daughter and asked if CU could be hereditary. He said it was entirely possible but he knew of no definitive evidence that it is. He wanted to try to investigate that further and ordered blood work to test my Tryptase levels. My baseline Tryptase level is 18. Normal is less than 11. He said I should be fine going forward, but I could be more prone to have anaphylactic events if I were to have an allergic reaction to something.
So, I was just curious if any of you had family with cholinergic urticaria or high levels of Tryptase.
Thanks y’all,
Crystal
David says
I am the only person with CU in my family, and have not tested for Tryptase. But as a side question, how severe was your urticaria? I want to try the medicines you described, but I’m not sure if they’ll be strong enough since my CU is extremely severe and immune to all medicines I’ve tried.
crystal9736 says
Hi David. My CU would not be considered severe. I don’t think, anyway. I did begin by trying to take the standard Zyrtec type medicines and none of them worked for me. Doxepin is what I was on for many years. It worked great completely controlling my condition. After about about 10 years, it began causing me to have sensitivities to gettting depression. With my doctor’s permission, I stopped taking it. We had hoped my condition wouldn’t come back. It did. I started feeling overly flushed and itching. I know what it felt like when I would begin having reactions, so I would make sure I was cooled and not allow myself to have a break out. So, we had to find another medicine. The Cholchicine was the next step and doesn’t have a lot of reports of depression type concerns. It works and keeps my CU under control. I would just talk with your doctor and figure what the next steps for you would be. Best of luck finding what’s right for you.