Reviews
Summary
Positives
- In one phase 2 study, patients on pirfenidone showed mean predicted FVC increases of 12.74% versus 4.35% on placebo, with 55% reporting clinically meaningful quality-of-life improvement PMC.
- In real-world Taiwan data, only about 4% of patients discontinued pirfenidone for adverse events, with most tolerating long-term therapy PMC.
Negatives
- Patients commonly describe gastrointestinal upset, photosensitivity skin reactions, and elevated liver enzymes severe enough to drop dose or stop the drug European Respiratory Review.
- Up to 16-20% of patients in real-world cohorts ultimately stopped pirfenidone, most often for skin or GI adverse events PubMed.
Hurdles & Side Effects
- Pirfenidone is FDA-approved only for idiopathic pulmonary fibrosis, leaving post-COVID patients to access it off-label and often without insurance coverage Pulmonary Fibrosis Foundation.
- Patients describe needing strict sun avoidance, food-with-dose timing, and frequent liver enzyme monitoring as ongoing burdens of staying on therapy PMC.
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