Idiopathic pulmonary fibrosis (IPF)

Why am I still alive?

I am a retired MD pharmacologist, but also a patient diagnosed 8 years ago with idiopathic pulmonary fibrosis (IPF).
According to medical literature the average life expectancy of patients with IPF is only 2 to 3 years after diagnosis. Surprisingly, I am still alive and learning how to deal with my disease.
My experience could be of interest to other patients with IPF.
There are many possible reasons for my longer survival:
1) IPF is probably not a single disease. A slowly developing form of the disease has been described. This "form" may actually be a different disease with a different cause and a better prognosis. I may be fortunate to have this "form".
2) My pulmonologist did not believe in the value of so-called standard therapy: steroids and immunosuppressants. He treated me conservatively: he did not prescribe any drugs, since it is conceivable that immunosuppressants actually shorten the survival time of some patients with IPF.
3) I decided to treat myself with N-acetyl cysteine (NAC, 600 mg, b.i.d.), vitamin C (1g q.d.) and resveratrol (50 mg q.d). A rather simple chemical, NAC has been described in scientific literature to antagonize profibrotic cytokines and experimental fibrosis in rodents. It is also an antioxidant, like vitamin C and resveratrol. NAC has been widely used in patients as a mucolytic and an antidote for acetoaminophen poisoning. It does no appear to have any side effects and is freely availablee in health food store as a dietary supplement.
4) My diagnosis was wrong. It is highly important to exclude all possible treatable causes of pulmonary fibrosis before making IPF diagnosis. Hypersensitivity to gluten, deep venous thrombosis (DVT), exposure to radon, chronic hypersensitivity alveolitis, or allergy to molds should be excluded. Patients with IPF- like symptoms should also try to change the environment
before accepting this terminal diagnosis.
Alexander Scriabine, M.D.