[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 plus….he was diagnosed 6 plus years ago based on a continual dry cough and now is age 67.

In his case any fried food or fatty meats or hamburgers would make taking OFEV unbearable, so now he carefully selects what he eats out.

We also discovered that going into elevation always resulted in a set back for him, once he got his portable oxygen, he was able to go more easily above 2200 ft……so my advice would be to make sure you obtain a Portable O2 machine like Inogen which can be rented with a prescription….before going to Colorado — wishing you a great trip and positive experience with OFEV

[Rachel Norene]

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.    We do credit the OFEV with stablizing the FVC and the TLC (total lung capacity) readings, but regretfully, over the past two years, his DLCO has moved from 59% to 46% — and besides a serious dry cough everyday in the AM, for an hour or so,  and needing oxygen if we go above 2,500 ft, he is stable.    His old CPAP machine was traded in for a more sophisticated APAP machine that he qualified for and that dramatically improved the quality of his night sleep and waking up refreshed.

I read with interest, one post that the WEI LAb Chinese herbs helped the DLCO stay stable, I think we will try the WEI Lab Chinese Herbs, if anyone had a bad reaction to them, please let me know

And does anyone know how low one’s DLCO can drop before you are in serious trouble symptomatically??

[Rachel Norene]

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 friend or deep fried will aggravate my digestive system, ever since COVID eating home versus restaurant food has helped a great deal,,,,, but for the first year or so with OFEV I had quite a bit of gastro upset, requiring me to cut back on dosage and sometimes taking a break from the medication.. and then I discovered the benefits of taking pro-biotic 15 minutes before my meal and OFEV, I take Bio-K+ the non dairy rice based one seems to work the best on me…………and that’s after 1 full year of experimenting…….I was diagnosed 5 years ago, have been on OFEV for 3 years, and for past 2.5 years my PFT functions all leveled out with no decline, with the exception of the DLCO which continues to have a downward decline…….

wishing you and all the others similar success with OFEV!!

[Rachel Norene]

@jackie-leko-kalina

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 flying or if we were to go to over 2,000 altitude

He started OFEV about 3 years ago, and when symptoms got too bad he cut bad the medication to only 150 mg once a day— and on two occasions he stopped it for a solid week to give his system a break (that helped enormously)  — we truly believe his stop in his  numerical decline of   PFTs pulmonary function tests are a direct result of the OFEV,  he is doing really well with his breathing and no oxygen yet.

Then 1.5 year ago, he discovered that a chilled probiotic helped him, we experimented with several and the best for him is the Bio-K + he prefers the fermented rice one, to stay away from dairy — but even on the Bio-K+ probiotic,  he has some gastro issues, but nothing like before — definitely the foods that seem to aggravate him is  fried foods, fatty meats, poached eggs (but not fully cooked eggs) , and dairy

hoping a chilled liquid probiotic  (not pill form) will help you too, and also give yourself permission to take a break by either doing only half dosage or take a break to give your body a rest, it helped my husband both physically and emotionally to take the break in OFEV for a week or so…….take care, Sandi

[Rachel Norene]

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 OFEV several times…..sometimes dairy, fatty meats, eating out would result in tremendous gas and diarrhea.  What has helped him tremendously is getting off the dairy (he changed to Almond milk) and lactose free cream cheese, lactose free sour cream.   An even bigger help was introducing a little bit of  pickled foods each day (sauerkraut, pickles) and a pro-biotic from the refridge —  BIO-K+ — the non dairy version (made with either soy or rice)  — finally he no longer suffers with these diets changes.  Hoping it might help you as well.