Bruce F.

Hi Lynne,

I am very sorry to hear about your diagnosis.

I have asked my pulmonologist about genetic testing, and there is a test that will identify the genetic markers associated with IPF.  The lab that performs the test is in Canada, and we agreed to return to this topic if my young adult children want to know if they have the genetic…[Read more]

Hi Stella—I am not a physician or a psychologist, but if I can share an insight or two:

– if you are already suffering from or prone to depression, I can only imagine what the diagnosis of IPF or other illness which requires treatment with OFEV would exacerbate the depression.  Everyone lives with the abstract prospect of death, but the IPF di…[Read more]

Thank you, Renee!  My doctor has also indicated that missing OFEV for me in order to travel or for special occasions is not something I should worry about.  I have no underlying conditions, and I am young-ish at 59, and there is a lot I want to do and need to do that are not compatible with my usual 2x 150 mg. of OFEV each day.

I am a…[Read more]

Thank you for those kind words, Christie.  I posted again today for the first time in a while, and it is nice to know that you found it helpful.  We are all learning from each other, which helps me feel better.

Hi Maria—

Sorry to hear  about your diagnosis, but glad to see you reaching out.

Edible cannabis has helped me with the constant nausea and loss of appetite.

I have been on OFEV 150 mg twice daily for 10 months after being diagnosed with IPF.  I am otherwise healthy and in my late fifties.

My experience with OFEV rhymes with much I’ve seen…[Read more]

1. Mike,

I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.

I had the experience of watching my father and  my grandmother die of IPF, and now I have been diagnosed as well.  I am not a medical p…[Read more]

Mike,

I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.

I had the experience of watching my father and  my grandmother die of IPF, and now I have been diagnosed as well.  I am not a medical person nor a p…[Read more]

Thank you!  That is very helpful.  I struggle with the morning dose and may ask about moving to a 100/150 routine each day.  Good luck to one and all as we navigate our way through the days!

Hi everyone—I am new to the illness, the medicine, and to this group.  I am working hard to manage appropriate food intake while on OFEV.

I hope there is an active discussion board about nutrition here; I will look and report back to this thread!

Best wishes to all of you!

Sorry to hear of your loss.

When the time feels right, I hope you will share something if Ernie Kully’s life with the board.

Be well,

JB Fort

Here  is an article on familial IPF that covers some of the questions raised on this thread.

I was diagnosed with IPF this spring.  As the son and grandson of IPF patients, and as the father of young adult children who May of may not have a genetic predisposition to develop IPF at some point, I have asked my pulmonologist about genetic t…[Read more]