Identifying my prodrome symptoms is key to managing HAE

Prodromes, or warning symptoms, are often the first sign of an impending disease flare. They occur in many chronic illnesses, but may vary among patients, even those with the same disease or from the same family.

Angioedema is a part of our family. My oldest daughter, Aria, has acute allergic angioedema, but she’s never required medication for her attacks. My adopted daughter, Leah, the first in our family to be diagnosed with hereditary angioedema (HAE), suffered for many years before being diagnosed with type 2 and receiving treatment. I was diagnosed two years ago with HAE type 3, meaning my C1 inhibitor levels are normal, and my oldest biological son, Dorian, was diagnosed last year with HAE type 1.

Each of us has different symptoms, from my abdominal swelling to Leah’s life-threatening laryngeal attacks. In addition to HAE, I also have mast cell activation syndrome and irritable bowel syndrome (IBS), and have dealt with lifelong gastrointestinal issues. As a result, I have a hard time determining which symptoms are caused by which condition, much less identifying any prodromes.

Recommended Reading

March 21, 2025 Columns by Danita LaShelle Jones

Why regular reviews are important when living with HAE

The importance of knowing your prodrome symptoms

I recently experienced one of my worst-ever HAE attacks. Unfortunately, I waited days before taking my rescue medication due to my lack of understanding of my prodromes. Although I use a daily prophylactic medication and had my rescue medication with me on our weekend trip, I didn’t comprehend the alerts my body was sending me.

After traveling by car for several hours to arrive at our destination, I was tired of sitting and thought I would feel better once I got up and moved around. Some of the snacks I’d eaten probably weren’t the best choices, so I chalked my stomach issues up to that. The hotel bed was uncomfortable, further contributing to my aches and pains. I know that vibration and stress are two of my primary triggers, but I was more focused on the time away than on my health and well-being.

I woke up in the morning crying and in pain, believing I was just too old to ever enjoy a vacation again. I became very emotional. Yes, my abdomen was swelling, which is my most frequent HAE symptom, but I chalked it up to the higher altitude and my IBS. As the day went on, I became irritable, which limited our recreational plans.

By the second day, I was so unhappy that I asked if we could cut our trip short. My loving husband obliged, and we headed home. Throughout the day, I became very grumpy and upset. When we finally arrived home, I was so miserable that no one wanted to be around me, including myself. I finally took my emergency medication because the inflammation hadn’t resolved, and the pain had increased.

Within an hour or so, my swelling began to subside and my mood began to improve — though not nearly as quickly as they would have if I’d heeded my body’s warning signs and taken my meds earlier. Because I didn’t recognize my prodromes or take appropriate action promptly, it took much longer to recover from the flare fully.

The following week, I attended a promotional dinner for a pharmaceutical organization, and afterward, many HAE patients gathered and asked each other questions. Some discussed symptom differences or their family members’ refusal to be tested. Others spoke about having consistent swells throughout their life, then having a single, random episode of new and different symptoms. One woman asked if anyone else had become “fussy” as a prodromal symptom. Both my husband and daughter turned to me as my hand shot up immediately. I was stunned.

It was fascinating to learn that I was not alone in my struggle and that my mood changes could be a warning sign of HAE attacks. I still have trouble differentiating the causes of my symptoms, such as tingling, fatigue, nausea, rash, and muscle aches.

I’ve asked my family to help me by kindly, gently questioning if I might need to use my rescue meds. I hope for all our sakes that I learn to take more immediate action and prevent undue stress, especially on my body. Perhaps I’ve finally learned my lesson: All swelling needs to be treated.

We need to educate ourselves and always listen to our body, mind, and spirit, which offer clues about health and well-being. Delaying treatment can lead to further complications, some of which may become life-threatening. Above all, we must preserve life!

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.