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  • Linda Smith

    Member
    April 27, 2018 at 9:35 am in reply to: Advice for Newly Diagnosed Patients

    I was diagnosed,shortly after OFEV was approved. I had finally found a doctor who did not tell me I had asthma or COPD as decades of others had. He diagnosed me within minutes of my first visit. (Have the other pulmonary doctors not heard of IPF?)

    Once he had done all the preliminaries to confirm his diagnosis he gave me two years to live. Then he put me on OFEV. I’m sure I’m the first of his patients to take the drug.  It was, perhaps, a ‘what the heck’ decision on his part.

    I’ve had a little trouble with side effects from time to time, but this is the outcome.

    My lungs are clear. The IPF has reverssed itself.

    When I first learned this I was puzzled. Had I been misdiagnosed?

    The OFEV people call once a month to see how I’m doing. A couple of months ago I described my improvement and asked if other people were having this result.

    The caller said, “yes”, without details or numbers.

    I suggest that anyone suffering from IPF try OFEV. It may be an actual wonder drug. It certainly has been in my case.