Patient Comments: Pulmonary Fibrosis - Treatments

What treatments have been helpful with your pulmonary fibrosis?

Comment from: marcough, 55-64 Female (Patient) Published: October 22

I have a great pulmonary doctor. He put me on a drug called Actimmune. I was on it quite a while, but I believe it stopped the progression of the disease. It is an injectable drug three times per week. When I was diagnosed, I thought I had about four years to live. It has been 10 years since I have been diagnosed with pulmonary fibrosis. I still have fatigue and shortness of breath. I just take it easy when I feel tired.

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Comment from: ylansing, 55-64 Female (Patient) Published: March 29

Three months ago, I was diagnosed with pulmonary fibrosis, secondary to rheumatoid arthritis. It was found after a bout of pneumonia that left me hospitalized for eight days. I was prescribed what seemed like massive doses of prednisone to reduce the inflammation in my lungs. I lost about 20% of my lung function. I still get shortness of breath with even a short walk. I've learned to walk slower and pace myself with my activities. I have to sleep with oxygen. Otherwise, I'm reasonably healthy. I'm trying to learn as much as I can so I can plan the rest of my life. Recently, I retired because my job was very stressful and I just don't have the energy to carry out the duties of my position. Needless to say, I'm scared.

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Comment from: Mare, 75 or over Female (Caregiver) Published: January 03

My mother died from this disease at the age of 84, this is a horrible disease. She lasted 3 years with it, her last year of course was the worst. Her doctor had prescribed a daily dose of predisone and thus this caused her to have diabetes, which she never had before. She was also on oxygen. We're still not sure what the cause of this is to this day. The woman never smoked a day in her life, she was a very healthy woman. This disease robbed her of her dignity.

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Comment from: sandie, 55-64 Female (Patient) Published: March 02

I have just been diagnosed with Methotrexate-induced pulmonary fibrosis. After a two-week stay in the hospital, I'm home with oxygen. I'm still coughing badly, breathless and my chest pain is ongoing. I had a heart attack three months ago. I'm 62, female, and no longer working. I have lost 36 pounds in the last month as my coughing causes me to vomit non-stop! I'm so tired. My blood pressure has always been high; now it averages at 193/88.

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Comment from: Ken, 75 or over Male (Patient) Published: February 08

I was diagnosed by biopsy with Idiopathic Pulmonary Fibrosis in Jan. 2006. My Doctor prescribed actimmune and my breathing tests and chest x-rays have not shown a change since the first ones. I have not have any of the dreaded side effects of the drug and feel blessed to be here. My blood/oxygen is 95% and my main symptom is shortness of breath if I push myself too hard, when this occurs, I just rest. I am 76 years old and still very active.

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Comment from: Pat, 75 or over Male (Patient) Published: January 21

Even though I had no GI symptoms, I treated myself aggressively assuming that reflux with aspiration of stomach acid was the cause. This included not just the usual dietary changes and acid blocking medications. I also elevated the head of my bed six inches and slept on my left side rather than on my right side. My disease was progressing rapidly before I made these changes. There has been no sign of any further progression over the past 18 months. My last four pulmonary function tests were unchanged from baseline. I think that the fibrotic scarring in my lungs is due to chronic reflux and aspiration.

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Pulmonary Fibrosis - Experience Question: If known, what was the cause of your pulmonary fibrosis? Please share your experience.
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