What I learned from my first experience with rescue medication

I was diagnosed with hereditary angioedema (HAE) in 2023. I have what is sometimes called type 3, or HAE with normal C1 levels.

I take a daily maintenance medication, Orladeyo (berotralstat), which has been amazing from the first trial dose. I also have a backup rescue medication for any breakthrough attacks. Until recently, I’d thankfully never even tried it, because any flares I had were so minor. Then came Passover.

In our blended family, my husband is ethnically Jewish, and I’m a convert. One of my sons, Canon, who is not Jewish or very observant of any particular faith path, does love to celebrate holidays with us.

For two years, he has asked me to host a Passover Seder dinner and invite his girlfriend’s family. I love that he wants to share our culture, but a full Seder is quite a big commitment. Just reading though the Haggadah, a booklet that retells the story of the Exodus and explains the ritual elements, can take hours.

And then there’s the food. Don’t get me wrong, it can be a simple and casual event, but I knew full well when he asked that he wanted the full meal deal, no holds barred — a six-course meal!

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I try to regularly allow myself downtime to take it easy on my body and not overdo things, which can cause a flare of any of my multiple diagnoses, the big one being HAE. I want to avoid attacks, but I knew this time it might be unavoidable.

It takes me a couple weeks to prepare for a Passover. There’s pre-Passover cleaning to remove all leavening — including breadcrumbs — from the entire house. Then the Seder table settings: polishing the silver, preparing crystal, getting out the china and all the serving pieces, ironing linens, and more. (I’m from the South, where we go all out to entertain!) Finally comes all the food preparations and timing of the courses.

I was incredibly intimidated, though, when I learned that his girlfriend’s dad is an amateur chef and wine aficionado — all of which equaled physical, mental, and emotional stress.

A labored recovery

The day following the event was rough. I stayed in bed all day and could hardly move. The next day was better but not great, and I was definitely swollen. The third day out, I felt like I had the flu. By the fourth day, I could tell it was inevitable: I needed to try my rescue medication.

I hate needles, and my rescue medication is an injectable. But I had to do it. Otherwise, I’d be heading to the doctor — or worse, the emergency room. Within minutes after using my Sajazir (icatibant) injection, I began to feel better! The brain fog was lifting and my body was deflating.

Yes, I willfully entered this event knowing that it’d most likely have a negative impact on my health. However, it was a labor of love that also boosted my joy of entertaining and of family celebrations.

I don’t advise doing this to yourself, but I confess my own weakness on this occasion. For me, it was worth it, as it pushed me to finally see the benefits of always having my rescue medication on hand.

It’s still hard for me to know initially when I feel a flare coming on, or whether it’s an allergic reaction, mast cell activation, or an HAE attack. The bottom line is that regardless of what it is, it’s always important to be prepared.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.