My husband has been on OFEV for 3 years and we do believe it slowed down the progression of IPF — after struggling with the gastro effects for the first year, he discovered the benefit of taking a probiotic and eating fermented (not pickled) but fermented cabbage, beets, and veggies — the probiotic that works best of all on him is… Read more

I too am incredibly grateful for this support group and to Charlene for your leadership and openly sharing your experiences, and wisdom!!  Re the DLCO, my husband were experienced a decline in all PFT readings, and thus we went on OFEV, it took time for him to adjust and taking a daily morning probiotic that is refrigerated  really helped him. … Read more

Thats a great achievement to get approved, and yes, its a bit of a challenge taking OFEV with food which is essential. For those of us over age 65 and on medicare, its $2,700 for January and then minimual $12 a month for the balance of the year — is that other people’s cost as well??

I find that fatty meats, or any fried foods, either… Read more

Hello Jackie — I can well understand what you are going through, as I watch my husband suffer terribly as a result of the OFEV — he has IPF and Emphysema, he was diagnosed 4.5 years ago currently age 66 ,  but at the same time because of OFEV we believe he obtained all this extra time, and feel so very fortunate now he only  needs oxygen when… Read more

My husband has been taking OFEV for 1.5 years, and was diagnosed 4 years ago with IPF.  For the first 3.5 years of our PFF testing (every 3 to 6 months) there was a slow, steady decline in  his PFF stats. Over a 6 month period we now have the PFF tests leveling out with no  decline. He had terrible gastro side effects, causing him to cut back… Read more