Trying a new treatment for HAE didn’t go as I’d hoped
After weighing the pros and cons, I decided to give Andembry a try
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Note: This column describes the author’s own experiences with Andembry (garadacimab-gxii) and other medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Last month, I shared that I was overwhelmed when my immunologist suggested I try a new hereditary angioedema (HAE) treatment. Although I was happy with my daily oral maintenance medication, Orladeyo (berotralstat), I’ve been having more frequent swells, likely due to stress, and thought maybe a different treatment would help.
Since I was diagnosed with HAE two years ago, I had to endure subcutaneous injections only a few times before starting an oral rescue medication called Ekterly (sebetralstat). I’ve been rather needle-phobic since some traumatic experiences during childhood, and even blood tests make me anxious. So I was none too pleased at the prospect of trying the injectable medication Andembry (garadacimab-gxii) to treat my HAE.
I went back and forth for a while, weighing the pros and cons. The biggest downside for me was that it’s administered subcutaneously and can be injected into three possible spots: the back of the upper arm, the thigh, or the belly. Most of my swells are abdominal, and having administered a few injections of Firazyr (icatibant) into my belly, I knew that area would be painful, especially with all my thin skin and stretch marks. I also knew the loading dose would involve two injections. Ouch.
The biggest pro was that it’s a monthly injection, meaning I’d only have to think about it once a month. I wondered if the medication could also help reduce the frequency of my HAE attacks, as Andembry works higher up in the contact activation cascade than Orladeyo.
Additionally, because two of my children have HAE and see the same doctor that I do, I thought I could “take one for the team” by trying Andembry and sharing my experience with them. Having a firsthand account from someone they trust could help them make an informed decision about whether to try it themselves.
I was also a little concerned about how my other medications might interact with Andembry. But because they’re all prescribed by either my immunologist or other doctors within the same practice, I knew my immunologist would have a detailed list and could identify any potential issues. Therefore, I decided to bite the bullet and give it a go.
The following is my experience with the medication. Big thanks to my amazing husband for accompanying me to the appointment and providing fantastic physical and moral support throughout the ordeal.
My experience with Andembry
The initial loading dose was two injections. I chose to have one in my arm and the other in my leg. Within two minutes, I began to feel lightheaded. The physician’s assistant asked me to wait for a while in the room. Once I felt a bit more stable, we were allowed to leave. However, I did rely on my husband’s arm for stability.
The lightheadedness continued into the next day, along with blurred vision, fatigue, and irritability. These symptoms were then compounded by a three-day abdominal swell, requiring multiple doses of rescue meds, in addition to huge emotional swings. The positive effects I’d noticed from a new rheumatologic medication also seemed to be canceled out. I felt as if I were in an HAE downward spiral. Every possible trigger was setting off a swell, especially the stress of the situation. I was under so much emotional strain, it was overwhelming.
At that point, I called Andembry representatives to report my reaction and get further guidance. I was both surprised and relieved to be told that these symptoms were understandable, especially since I have HAE type 3, meaning my C1-INH levels are normal. Knowing that the loading dose was twice the monthly maintenance dose, I asked about the half-life and how long it would take to be out of my system. Sadly, I was told it would take two to three months.
The following week, I canceled my prescription for Andembry and informed my doctor’s office that I would not be continuing with the medication. I plan to return to Orladeyo as soon as possible, hopefully within a couple of months. In the meantime, I continue to reach for my rescue meds as needed.
Remember, this is just my experience. Please discuss your personal treatment plans with your doctor.
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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