AERD (Samter's Triad) Frequently Asked Questions
How common is AERD?
It is estimated that 7 to 10% of adults with asthma have AERD. Studies have found that among those with severe asthma, about 15% have the disease. Up to 40% of those with both asthma and nasal polyps have AERD. Based on these figures, experts believe that there are over 1.5 million people in the United States are living with AERD. Unfortunately, many have not been diagnosed.
What causes AERD?
The cause of AERD remains unknown, but there are likely multiple factors involved. Experts theorize that environmental factors such a virus or a toxin may trigger the disease process.
Is AERD an autoimmune disease?
Currently, AERD is not considered an autoimmune disease. Autoimmune diseases involve antibodies attacking tissues in the body, which does not appear to be what is happening in AERD. Instead, experts have referred to AERD as a 'chronic immune dysregulation.'
Why does this disease have so many different names?
The disease currently known as AERD has previously been called Samter's Triad, Aspirin Induced Asthma, and several other names. There is a push in modern medicine to give diseases descriptive names instead of naming them after people, which is why "Samter's Triad" was moved away from. In many countries, the disease is called NERD, or NSAID Exacerbated Respiratory Disease. AERD and NERD are the same disorder - both conditions cause reactions not only to aspirin, but to all NSAIDs that preferentially inhibit the COX-1 enzyme. "NERD" is not used in the United States simply because of the funny acronym.
Is AERD genetic?
AERD does not run in families. You did not inherit it from your parents and your children have no increased chance of developing the disease because you have it. There may be some genetic factors involved in the development of the disease, but it is not passed on from one generation to the next.
Can I take other NSAIDs once I've been desensitized to aspirin?
Once patients are desensitized and taking at least 325mg of aspirin per day, they should be cross-desensitized to other NSAIDs (ibuprofen, etc.) and should be able to tolerate them. On rare occasions, patients who take additional NSAIDs on top of their daily aspirin report some mild increase in respiratory symptoms - but this is rare.
Can topical NSAIDs cause AERD reactions?
Yes. If a significant amount of these medications is absorbed into the skin, they can cause a reaction. This can occur with pain relief patches or creams and even with eye drops that contain NSAID medications.
What type of sinus surgery is best for AERD patients?
It is recommended that patients undergo a complete Functional Endoscopic Sinus Surgery (FESS) that removes nasal polyps and opens up all eight sinus cavities. This increases the effectiveness of topical steroid treatments following surgery. Surgery alone is not a permanent solution. It is recommended that patients undergo aspirin desensitization 3 to 6 weeks following surgery to prevent polyp regrowth. Procedures like balloon sinuplasty are typically not effective for AERD.
In some countries, nasal lysine aspirin is used to perform and maintain aspirin desensitization. Why is this not available in the United States?
Pharmaceutical companies appear to have no interest in bringing this drug to the United States. This is an older medication that is no longer patented, so it would not be profitable for them to do so.
Should I try a biologic medication like Nucala or aspirin desensitization first?
Currently, biologic medications like Nucala and Xolair are only approved by the FDA to treat severe asthma. If your main problem is severe asthma that is not controlled with corticosteroid medications, it may be appropriate to try a biologic medication first. Aspirin desensitization is most effective at treating sinus symptoms and preventing nasal polyp growth. If chronic sinus symptoms and recurrent nasal polyps are the main thing making you miserable, surgery followed by aspirin desensitization remains the gold standard treatment. There is no study (yet) demonstrating that biologic medications are as effective as aspirin desensitization at preventing polyp growth in AERD patients, although they have been shown to have benefits for sinus symptoms.
Why does AERD cause chronic fatigue?
Fighting a chronic inflammatory process can take a toll on your energy levels. Because of the nasal blockage that occurs in AERD, some patients also have sleep related breathing disorders that contribute to chronic fatigue.
Are there patients who have such severe NSAID reactions that it would not be safe to perform aspirin desensitization?
Dr. Laidlaw of the Brigham & Women's AERD Center has said that there is no patient with a history of reactions so severe that it would not be safe to attempt aspirin desensitization. If a patient has uncontrolled asthma, doctors will attempt to bring the asthma under control with other therapies before performing aspirin desensitization. In patients with a history of very severe reactions, desensitization may be performed in a hospital. Regardless of prior history, it is extremely rare for patients to have such severe reactions during desensitization that it cannot be safely completed by an expert on the disease.
Do female hormonal changes have any impact on AERD symptoms?
Currently, there is only anecdotal evidence that hormonal changes can impact symptoms. More research is being done on this now. Experts have observed that pre-menopausal females often have more severe symptoms. Pregnancy has also been observed to have an impact on symptoms for many women.
If I don't have environmental allergies, is taking an antihistamine helpful?
Even in AERD patients who don’t have environmental allergies, mast cells are often overproducing inflammatory chemicals like leukotrienes. It makes sense that they may be overproducing histamine as well. Antihistamines can have the side effect of drying out the mucous membranes, so they may provide some relief for those suffering from runny noses, regardless of the cause. Dr. Tanya Laidlaw of the Brigham & Women's AERD Center suggests that AERD patients without allergies experiment with antihistamines and decide for themselves whether or not there is any benefit. Antihistamines start working within hours and their effects fade away within 2-3 days after stopping. For AERD patients without allergies, Dr. Laidlaw suggests taking a daily antihistamine every day for a week and then stopping it completely for a week to see if you feel worse. Depending on the results, you can choose to stick with the antihistamine or not.
Can AERD cause chronic hives/rashes?
Yes. A small subset of AERD patients develop chronic hives (urticaria) as part of the disease.
How can patients explain aspirin desensitization to doctors who don't understand AERD?
The best thing you can do is print some medical literature for your doctor. A good example is this comprehensive article published in the New England Journal of Medicine. This Guide for Physicians may also be helpful. There are many other printable research articles in our library.
How does AERD affect patients as they age?
Unfortunately, AERD is not a transient disease. If you have this disease now, you will still have it when you are elderly. The symptoms of the disease can wax and wane over time, but does not tend to ever go completely away. In some patients, the symptoms of the disease may become less severe with advanced age. The same treatments are recommended for patients of all ages. Elderly patients are at a higher risk of bruising and bleeding due to aspirin therapy and may require a lower aspirin dose to reduce the risk of these side effects.
Does a low salicylate diet have any benefit?
No. All AERD experts agree that there is no scientific reason that dietary salicylates should be avoided. Dr. Tanya Laidlaw has recommended dietary fatty acid modification for patients who want to make dietary changes. Alcohol avoidance may also have a benefit as most patients react to alcohol. Alcohol reactions are believed to be caused by the polyphenol content of alcohol and not due to salicylates.
Is loss of sense of smell temporary or permanent?
If nasal polyps and sinus inflammation are adequately controlled, most patients can regain sense of smell. In some cases, unfortunately, the loss of sense of smell becomes permanent. This can happen due to damage to the olfactory nerves or because the pathways in the brain that interpret smells become inactive. A good predictor of if there is permanent smell loss is if sense of smell returns temporarily with oral corticosteroids.
More Answers Coming Soon!
Where did these answers come from?
Dr. Tanya Laidlaw of the Brigham & Women's AERD Center provided answers to many of these questions in the below webinar. Dr. John V. Bosso and Dr. Nithin Adappa of the Penn Medicine AERD Center answered many other questions in the live Q & A event you can view below.
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