Wife's breathing problems require a deeper diagnosis
DEAR DR. ROACH: My wife had nasal polyps removed many years ago and within a year was diagnosed with adult asthma. She also contracted MAI several years ago, for which she was treated. In the past, she had one or two difficult periods of breathing, and her pulmonary doctor prescribed prednisone to get her through those severe times. When she develops a cough, more mucus builds up, and her breathing becomes a problem to the point that she can barely breathe and needs severe treatment.
The problem is that she also has severe osteoporosis, and all steroids are the worst thing she can take, as they destroy bone. She has been taking Advair daily since her original diagnosis. She has never been a smoker nor exposed to secondhand smoke.
Despite having been to several major hospitals and seeing many pulmonary doctors with the finest reputations who have done extensive research, her conditions have worsened and she has almost died multiple times in the past two years due to her lung failure. She is not a candidate for a lung transplant, and we have not found anything to help her get better or off the worst of the worst drugs. -- B.
ANSWER: You've identified two lung problems: asthma and MAC, which is mycobacterium avium complex, a lung infection similar to tuberculosis.
Asthma ranges in severity from so mild a person almost never knows they have it to repeatedly life-threatening. However, asthma is seldom a diagnosis that causes dilemma -- there are many newer treatments that do not require prednisone, which absolutely is terrible for bones, and I suspect that she doesn't have just asthma alone.
MAC can occur in people, usually middle-aged women, with no history of lung disease, but also occurs in people, usually older men, with existing chronic lung disease. Symptoms resemble tuberculosis with a productive cough, weight loss and tremendous fatigue. Treatment is with two or three antibiotics and typically lasts 15 to 18 months. Some 80% to 90% of cases are successfully treated, if the person is able to tolerate the medications for the entire course of therapy.
However, her severe course, your description of the mucus, the term "lung failure" and even that there is a consideration of transplant makes me think there is still something more going on. I would be concerned that she has underlying lung disease, such as a chronic obstructive lung disease -- which includes emphysema or chronic bronchitis -- or bronchiectasis. Both of these have features that can be confused with or overlap with asthma.
Further evaluation, including imaging of the lung (CT scan is normally best) and pulmonary function testing, is needed. Given that she was never a smoker, a diagnosis of emphysema or bronchiectasis by these tests would raise the suspicion of something like alpha-1 antitrypsin deficiency. Alpha-1 antitrypsin is an enzyme that blocks other enzymes that damage the lungs if unchecked. Exposures to the lung from other noxious substances besides tobacco smoke are occasionally the cause of COPD in nonsmokers. Cooking fires and occupational exposures are possible but no longer common in North America.
Once she has a firm diagnosis, she should hear about alternatives to steroid drugs. In the meantime, inhaled steroids, such as the kind contained in Advair, are effective without causing much bone damage, and I hope she is on treatment to strengthen her bones.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or send mail to 628 Virginia Dr., Orlando, FL 32803.
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