Rachel Norene

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 Bio-K…[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 pan…[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 f…[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 on…[Read more]