Having an Excellent Reason to Raise Your Voice

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“Nope!” I said matter-of-factly to my general practitioner. “The only thing that does is make me feel loopy.”

“We can’t have that,” he replied. He jotted something down on his trusty prescription pad, ripped off the top sheet, and handed it to me. “Let me know if this works for you.”

I was so grateful. It was allergy season, and I needed to get some medication to breathe out of my nose without feeling lightheaded.

At first, I was going to let it go. I was taking the “go-to” medication for people with seasonal allergies. Every time you turned on a television, there was a commercial for this pill. By all accounts, I was taking the best one on the market. Even my family praised this tiny pill for how it seemed to cure all sinus issues.

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But for me, it wasn’t effective. I often found myself going a day or two without it, preferring not to feel like my head was spinning. What confused me was that initially, the medication worked. It did exactly what it was supposed to do for a few glorious weeks. Was it possible that a drug can be great for a while and then suddenly stop working? The answer: yes.

My newly prescribed allergy pill worked wonders. It proved that I could have a great medication that did what it was supposed to and make me feel good, all because I finally said something to my physician.

Yet 20 years later, even though I found myself in a similar situation with our oldest daughter, whom we affectionately refer to as Ladybug, I found myself a little less eager to speak up.

Even though Ladybug was officially diagnosed with hereditary angioedema (HAE) in 2021, by 2020, we’d already grown accustomed to a specific medication regimen. I was trained to give her Berinert infusions at home for emergencies. Still, it had become apparent that she would need a preventive medication, so we weren’t using Berinert every few days.

Enter the prescription for Haegarda. My husband and I were so excited that we would finally have access to a medication that didn’t require finding a vein on the arm of our frightened daughter.

But while getting the prescription had been hassle-free due to Ladybug’s amazing medical team, receiving the medication was a different story. There was a six-month tug of war with insurance companies, preapprovals, and paperwork. There were more hospital trips and documentation required. Getting the medication in hand became arduous, but we were up for the fight.

Finally, after in-home training, the medication arrived. We finally had Haegarda in the house. And it worked exactly the way everyone said it would.

However, toward the end of last year, I noticed an uptick in Ladybug’s flares. She started to complain more about stomach and hand aches. Soon, we were using and running out of Berinert more and more. Then, we were back to frequent ER visits and hospital stays.

The medication’s efficacy seemed to wane, and I was terrified to tell Ladybug’s HAE doctor. What if there weren’t other options? It was easy to dictate that I was not too fond of a specific allergy pill — hundreds of alternatives are on the market. But my limited knowledge of HAE and preventive care made me question if the same were true in this case.

I also felt ungrateful. The medical team had done so much to get Ladybug the preventive meds. All that hard work, filings, paperwork, and preapprovals took so much of their time, and here I was about to tell them that she may need something else.

After Ladybug experienced another hospital admission, I woke up one morning to find a message on my voicemail from one of our favorite nurse practitioners.

“Call us,” she said sweetly at the end of her message. “We may need to change her medication.”

I blew out a breath of relief. Not only did the medical team understand, but they were also offering options.

When she finally switched to Takhzyro (lanadelumab), we noticed a significant difference. And I couldn’t help but realize that we may have found it a little faster if I’d said something sooner.

As a caregiver of a person with a chronic illness, I believe it’s important to remember that even if a medication works for others, it may not be the best option for them. Always remember that the most powerful instrument every caregiver has is their voice.

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.


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