I would like to find other people with Pulmonary Fibrosis I feel so alone and would love to hear how other people manage it. I have been diagnosed 10 years ago and started on high dose steroids to get the symptoms under control, that was terrible as my face was so swollen,
I eventually came down after a year to 10mg. This year has been hell due to worsening of the symptoms and I cough all the time sometimes until I am sick. I have a oxygen concentrator which helps a bit, but the thing I would love here about is I only have Ventolin and I seem to cough so much after taking it I'm wondering how if effects other people. The
hospital said steroid inhalers will not help much, so I just plod on struggling through the day.
Any feed back how anyone copes with this awful disease would be so helpful.