How to manage MAC lung disease in my 54-year-old mother?

Question

Hello doctor,

My mom is 54 years old and has been coughing for almost eight months. Unfortunately, it was not taken seriously until last month when she finally had a bronchoscopy. The results showed that she has Mycobacterium avium complex lung disease.

She has also had bronchiectasis for several years. Her pulmonologist started her on a treatment regimen that includes Azithromycin, Rifampicin, and Ethambutol about three weeks ago. However, she has been vomiting almost every day and has lost weight rapidly.

Her sputum culture still shows heavy growth, and her latest CT scan revealed new cavitary lesions in the right upper lobe that were not present before. Additionally, she has low vitamin D levels (18 ng/ml) and slightly elevated liver enzymes (ALT is 67 U/L).

She lives alone most of the time and struggles to manage all these medications on her own. We are worried about how long this treatment will last and whether these lesions could cause permanent damage. Is there a chance she might need surgery? What should we be monitoring during her treatment?

Please guide me.

Answer 1

Hello,

Welcome to icliniq.com.

I have read your query and understand your concern.

I can understand how stressful this must be for you, especially seeing your mother lose weight and struggle with symptoms despite treatment. She is dealing with a chronic infection called Mycobacterium avium complex, and because she already has bronchiectasis, the lungs are more vulnerable, and the infection can behave more aggressively.

The medicines she is on are the correct standard treatment, but many patients do have difficulty tolerating them, especially in the first few weeks. Daily vomiting and such rapid weight loss are not acceptable and need attention.

In my experience, when this happens, we often need to adjust the way medicines are given, sometimes reduce or stagger doses temporarily, or add medicines to control nausea so that treatment can be continued safely. Her mildly raised liver enzyme also needs monitoring, especially with these drugs.

The new cavity seen on CT (computed tomography scan) means the infection is still active and has caused some destruction in that part of the lung.

These changes can become permanent if the disease progresses, but with proper and sustained treatment, we can still control the infection and prevent further damage. It is important to understand that this treatment is long-term, usually continuing for many months even after reports start improving.

Her ongoing sputum positivity at this stage is not unusual, as response takes time, but the combination of worsening scan and weight loss tells me her current regimen needs review rather than just continuation as it is.

Her nutrition is very important right now. Weight loss weakens immunity and delays recovery. If she is living alone, it becomes harder to manage such a demanding treatment schedule. If possible, someone should stay with her, or she should stay with family at least during this critical phase.

Surgery is not commonly needed, but in some cases where the disease is limited to one area and not responding to medicines, it can be considered. Right now, the priority is to stabilize her, improve tolerance to treatment, and reassess response.

Please watch for worsening vomiting, yellowing of eyes, vision problems, increasing breathlessness, or any unusual symptoms, and seek review immediately if they appear. I would strongly advise an early follow-up with her treating pulmonologist to adjust her treatment plan.

Hope I have addressed all of your queries and concerns. Do follow up whenever needed.

Thank you.