My CIU journey began in March of 2021. A few hives surfaced and were super itchy. Within weeks I was covered with hives. Sometimes my face would swell and on three occasions I went to the hospital with a croaky voice and smokers’ cough. The first two occasions prescribed heavy doses of prednisone (3-day-non-sleeping-rave-in-my-brain), and I was instructed to carry an epi-pen.
“Zombied” through my day
In order to see an allergist, I needed a doctor’s referral. My GP was helpful but uninformed on the cause of my hives. We tried prescription strength Benadryl and “zombied” through my teaching job, with no hive relief. Next we tried Blexten, which provided some relief, but the hives became larger. Then Monteukast which gave me seriously psychotic dreams. He referred me to the Edmonton Respiratory Clinic. I was advised to try Xolair. This process was super difficult. I filled out form after form and had to get special permission form my benefit plan to approve coverage. The cost of Xolair is absolutely ridiculous at $1488.15 per month. Although I have coverage and am super grateful, I feel sorry for the people that do not have this covered and cannot afford this. (Side note: I believe that Xolair will subsidize part of this)
I think its making a difference?
I am currently on my 10th dose of Xolair. I think it’s making a difference??? I avoid Advil (known to cause facial angioedema) and am trying to avoid high histamine foods. I take 20 mg of Claritin daily as well–not sure what long term effects there might be. I recently saw my allergist for the one year check up and we are going to up the Xolair dose to see if that makes a difference. Of course, if this is not covered, there will be no increased dose…
It is a debilitating condition
So here’s the thing, we do not know enough about Chronic Idiopathic Urticaria – causes are different for everyone and treatment varies. Some people get relief from Xolair within months however I still have huge flare ups often and have no idea why. Treatment is often determined by what is covered or what you can afford. It is a debilitating condition that dries your skin, forces you to choose which outfit will hide the hives best, hope you don’t break out on your face (can anyone say Quasimodo face?) and, worst of all, lack of sleep.
Go away CIU!
Tanya (Itchy) J.
Sherwood Park, Alberta
Clinical Trial Hero would like to thank Tanya for taking the time to share her story regarding Urticaria. Through stories we create connection and understanding – in relation to others, but also within ourselves.