The Difficult Diagnosis of Aspirin-induced Asthma: the asthma and aspirin connection
By: Kate Meda
Tags: Journey, Chronic Illness, Chronic Disease, Asthma, Autobiography

The Difficult Diagnosis of Aspirin-induced Asthma: from puzzling symptoms to a formal diagnosis Kate Meda Aug 23·6 min read

Aspirin-induced asthma has almost as many names as The Artist Formerly Known as “The Artist Formerly Known as Prince” (no, that wasn’t a typo). Aspirin-induced asthma is also known as Samter’s triad, Samter’s syndrome, triad asthma, and — my personal favorite — (N-ERD) Nonsteroidal anti-inflammatory drugs-Exacerbated Respiratory Disease. The name now settled on in the medical community is Aspirin Exacerbated Respiratory Disease or AERD.

What exactly is AERD?

Aspirin Exacerbated Respiratory Disease (AERD) is a chronic inflammatory disease characterized by a triad of symptoms: asthma, recurrent nasal polyps, and reactions to aspirin and other non-steroidal anti-inflammatory drugs (NSAIDs). Around 40% of patients with asthma, nasal polyps, or chronic sinusitis have AERD. The various non-allergic NSAID hypersensitivity syndromes affect only 0.5–1.9% of the general population and I’m one of the lucky ones.

AERD typically begins in young adulthood with onset occurring in the twenties and thirties with a slightly higher prevalence in women.

What are the symptoms of AERD?

Other than the triad symptoms, AERD can cause additional symptoms, like

Nasal congestion

Red, glassy, and watery eyes

Sinus headache

Sinus pain

Sneezing

Coughing

Wheezing

Fatigue

Dizziness

Nausea

Abdominal cramps

The reaction to aspirin can aggravate both lower and upper respiratory symptoms including a full-blown asthma attack. It’ snot fun.

What makes AERD difficult to diagnose?

The symptoms also typically develop over several years making the symptoms seem unrelated. Primary care doctors routinely address asthma and nasal congestion separately without recognizing the underlying cause. Furthermore, patients may not be aware of their sensitivity to aspirin and NSAIDs or may not exhibit sensitivity to aspirin at all.

What treatment options are available?

AERD is difficult to treat because there is no one-size-fits-all approach. With the right combination of treatments, patients can find relief. Aspirin desensitization and high-dose aspirin is currently the most effective treatment for AERD but there are other options available like

The unfortunate side effect of AERD is being treated by doctors unfamiliar with the best treatment options for the disease. Patients endure years unsuccessfully on antihistamines, allergy shots, or oral steroid bursts, that have limited benefit for AERD. It’s important to find an expert.

My journey: from puzzling symptoms to a formal diagnosis

As a child, I was privileged with good health. So much so that my mother cancelled my health insurance when I was 10 years old (probably not a great idea, but hey, why not challenge God?), and I didn’t have it again until the age of 18. Then I turned 23.

I remember it as clear as day: the last day I can remember taking an 800mg ibuprofen without a reaction, the last day I remember being healthy. I ran the Baystate Marathon in Lowell, Massachusetts in October of 2014 and woke up with a stiff neck (both a marathon and a stiff neck? Again, it wasn’t my idea to challenge God). I took ibuprofen to relax my aching neck. A few days later, I came down with a terrible sinus infection. A month passed, I still had an infection. Another month passed, I still had the infection. Then winter struck with a vengeance, and I started to develop a dry cough. Finally, I went to an allergist.

I sat hopelessly in her office. Then, she came into the room and slammed her fist as though she was wielding Thor’s hammer on the table with confidence and exclaimed, “Kate, we are going to get to the bottom of this! We’re going to figure this out.” I was unconvinced yet she radiated such entrancing confidence that I couldn’t help but feel determined, “Yes, Dr. Appleyard! We will find that solution! Totally!” And off I went, giddy in my Minnetonka moccasins.

I tried every treatment available from Allegra-D to high dose Augmentin to albuterol nebulizer treatments, but the sinus infection persisted like a visit from an unwanted relative who stays too long (or Kanye West’s sex addiction). At the same time, I was also having these strange upper respiratory tract reactions about one or two times a month. It would start with a tight chest, wheezing, watery eyes, and ceaseless sneezing for an hour. I just felt terribly sick all over. Even though the symptoms would subside after a couple of hours, the sinus infection was ever-present.

After ten months of nose-blowing, dry coughing, monthly respiratory reactions, a polypectomy, and desperate for answers, I sought out l’aid de l’internet (the help of the internet). I typed in my symptoms to Google and stumbled upon the Wikipedia page on AERD. Yes, Wikipedia. Don’t @ me like that. Wikipedia can be a well of useful information, but cross-referencing is advisable. Anyway, I read furiously and felt understood. This must be it, I thought. It also clicked. That reaction I was having once a month? Well, the only time I took an Advil was during my period, when I would get those debilitating asthmatic reactions. I sat there with anxious elation. I had a diagnosis. I knew this had to be it.

I scheduled the first available appointment with my allergist and excitedly erupted into a ten-minute elaboration of my symptoms. I thought my allergist would scold me for relying on an internet diagnosis and tell me that I was now one of the victims of a WebMD rabbit hole. I was worried she was going to laugh at me for my “research,” “Kate, you’re ridiculous!” I heard her snidely say. I pictured myself running out of the room melancholic and dejected, the complementary feelings of a non-diagnosis. But no. To my surprise, she was patient. She was understanding and gentle. And she agreed. Based on my symptoms and past medical history, she corroborated my findings. I had AERD. I finally had a formal diagnosis. I was at peace. I had a name for what I was experiencing and what I was experiencing wasn’t in my head (an unfortunately common diagnosis for women).

Because of my disease, I have chronic asthma, anosmia (loss of smell), recurrent nasal polyps, muffled hearing, year-round sinus infections (a real treat for a professional singer), and other aggravating symptoms. It means that when I take a break to smell the roses, the roses typically smell of Flonase. It means that phlegm lines my vocal cords and collects deep in my lungs; sometimes I can’t sing with clarity or breathe with regularity.

I don’t just have seasonal allergies, I have a chronic inflammatory condition. The disease doesn’t define me, it is me.

Even now, seven years after my formal diagnosis I find myself on an examination table in urgent care or other doctor’s office, and usually doctors — unaware of the disease — look at me perplexed, uninformed, wondering if I made up my disease by stringing together symptoms to form a mega disease.

If it weren’t for a specialist believing in me and my tenacity in finding answers, it may have taken much longer to receive a formal diagnosis, if I ever received one at all. After all, up to 20% of AERD patients go undiagnosed.

̶S̶o̶m̶e̶t̶i̶m̶e̶s̶ we need to be our own advocates.