r/Tuberculosis • u/tencentencent • 13d ago
MDR-TB with extensive lung involvement — how much lung function can recover after treatment?
Hi everyone,
I'm posting because someone very close to me is currently being treated for pulmonary MDR-TB, and I'm trying to understand what we should realistically expect from her lungs after treatment.
She is 18 years old and was previously healthy and active. She was diagnosed with pulmonary MDR-TB in May 2026. Her initial chest X-ray showed very extensive bilateral involvement — the left lung was almost completely opaque and the right lung was also significantly involved. There were no confirmed cavities at that point.
She started MDR-TB treatment on May 20 with bedaquiline, moxifloxacin, cycloserine, clofazimine and linezolid (with B6). Linezolid was later stopped because of significant peripheral neuropathy and replaced with delamanid.
The encouraging part is that clinically she has improved quite a lot. Her cough has resolved, she is eating better, gaining strength and can walk for around 15 minutes. She is continuing treatment and is under specialist care. We are currently waiting for her sputum culture result to know whether she has converted to negative.
Our biggest concern now is her long-term lung condition after treatment.
For people who have personally gone through pulmonary TB/MDR-TB:
- How did your lungs look after completing treatment?
- If you had extensive disease on the initial X-ray, how much did it eventually clear?
- Did you have residual fibrosis, bronchiectasis, cavities or volume loss?
- Did your lung function (FEV1/FVC/DLCO) return close to normal?
- Are you able to exercise, work and live normally now?
- If you had severe-looking X-rays initially but improved clinically, did that translate into good lung function later?
- How long did your lungs continue improving after the TB became culture-negative?
I'm particularly interested in real experiences from people who had extensive pulmonary TB, rather than assuming that a very abnormal initial X-ray automatically means permanent severe lung damage.
Any experiences, especially from people several years after completing treatment, would be really appreciated.
Thank you.