My mother has MAC lung disease. How to prevent weight loss?

Question

Hello doctor,

My 62-year-old mom was diagnosed with Mycobacterium avium complex (MAC) lung disease eight months ago, and the treatment is making her extremely sick.

She has a chronic cough that produces thick mucus every day, and continues to lose weight; she has gone down to 98 pounds from 125.

Her pulmonologist has her on Azithromycin, Ethambutol, and Rifampin, but the side effects have been awful.

She has been experiencing blurry vision due to Ethambutol and failed the color vision test last month, so they had to reduce the dose. Rifampin has turned all her body fluids orange, including her tears, which stain her contact lenses.

She is also menopausal, and the MAC lung disease seems to have worsened after she stopped hormone replacement therapy two years ago. Her CT scan shows nodules and bronchiectasis in the right middle lobe and lingula.

She performs airway clearance therapy twice daily with a nebulizer, but still experiences shortness of breath when walking to the mailbox. I am worried because-

I have read that MAC lung disease is very difficult to cure and often requires years of treatment. Can it spread to other family members?
Also, should she be on any supplements to help with the weight loss?

Kindly suggest.

Answer 1

Hello,

Welcome to icliniq.com.

I understand your concern.

Your mother has Mycobacterium avium complex (MAC) lung disease, and the CT (computed tomography) pattern you mention fits the chronic nodular–bronchiectatic form.

This type is slow and difficult, but not hopeless. Treatment is long, careful, and needs to be individualized for each patient.

The combination of Azithromycin, Ethambutol, and Rifampin she is taking is the standard backbone recommended for MAC lung disease and is usually continued for at least 12 months after sputum cultures become negative. Side effects are unfortunately common.

Orange discoloration of urine and tears with Rifampin is expected and harmless. Ethambutol can affect vision and color perception, so the dose adjustment after her abnormal color-vision test was absolutely the right step.

She must continue regular eye checks, and any new blurring or change in color vision should prompt urgent review.

If toxicity becomes significant, her doctor can modify doses, adjust dosing frequency, or consider alternatives, but such changes must be done under the guidance of an experienced pulmonologist.

Her disease pattern is very typical of this form of MAC in older, thin, post-menopausal women. Stopping hormone replacement therapy was not a cause, but hormonal and body-composition changes do contribute to susceptibility, something well recognized in the literature.

MAC lung disease of this kind is not contagious person-to-person in the home. These bacteria come from the environment: water, soil, and aerosols, and cause infection only in people whose lungs are vulnerable. Family members are not at risk from ordinary contact, but she should avoid sharing nebulizers or airway-clearance devices.

Persistent cough, phlegm, and breathlessness despite therapy are common. Effective care relies on three things working together:

Appropriate antibiotics.
Regular and efficient airway clearance (nebulization, oscillatory devices, breathing techniques, and pulmonary rehabilitation).
Optimization of general health and nutrition.

Her weight loss is significant and must be treated as part of the disease itself. Patients with low body mass do worse if nutrition is not supported. A high-calorie, high-protein diet with frequent small meals, liberal healthy fats, and oral nutritional supplements is strongly recommended.

I suggest you check her vitamin D, B12, and iron levels, as daily multivitamins or targeted replacement can help.

If nausea from medication limits her intake, her doctor can adjust timing or, in certain cases, use three-times-weekly dosing to improve tolerance without compromising disease control.

I hope this answers your query.

Thank you.