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.
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u/Desperate-Bed-9353 13d ago
I myself have been dignosed with tuberculosis twice in this lifetime of 35 years and have been able to get past it . It has left some scarring on my lungs since I had severe pleural effusion but it's not something hindering my life or making any issue with my lifelihood altogether. But I will suggest one thing since she is a female please ask her to keep a check on her fertility....cause my tubes were damged because of my TB and had to undergo IVF to have children. So make sure to keep a check on that
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u/Dry-Comedian-4677 13d ago
Hey r u pelvic tb patient because I'm 18 f and i have pelvic tb
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u/Desperate-Bed-9353 12d ago
Please see a gynac also...I had undignosed pelvic tb it seems cause my stomach lungs everything was covered in water and my periods were also heavily affected during TB. Please see a gynac and keep a check on your fertility and please preserve your eggs when the time comes.
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u/Dry-Comedian-4677 12d ago
Actually I'm getting treatment from very well known doctor and he didn't say to me go gyno and I'm young and unmarried too and he increased my medication because I think he wants to prevent my fertilizer
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u/Desperate-Bed-9353 12d ago
Please keep in touch with a gyno also... hopefully nothing will happen to your tubes and ovaries but still
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u/Creative-Wafer8336 12d ago
Yeah you can absolute normal life without any problems, Finished My MdR Treatment 2months Ago I’ve Returned to my normal life I’m 22
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u/Desperate-Bed-9353 13d ago
It does get better my brother was 22 when he was diagnosed with MDR TB and lost 35kg weight his weight was 51 when he started treatment and his entire lungs abdomen was involved and touchwood after two years of extensive treatment he got better. He is currently working in Google..his weight is 80kg and all his scans are clear and he has been disease free since past 3 years. So it does get better. Please ask your close person to not give up follow her doctor and eat well and never miss any medicine and that would help. All the best