Thanks, Maurice! I also recently noticed the mention of dextrometgorphan as a possible tool against fibrosis, and it sounds like something to ask your pulmonologist about. I am not a scientist or a dosctor, but from what I can tell this may be of some promise.

Read more in this recent publication from the NIH (and trust that the freeze on…

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Hi Malcolm—

I would treat your cough aggressively, and hope you and your pulmonologist track it closely. I was diagnosed and symptom-free for two years until this spring, when I experienced a nagging cough which evolved into a very dramatic and damaging exacerbation of my fibrosis. I communicated with my pulmonologist via the portal and he…

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Interesting to know that the Toyota Sienna’s inverter has that much capacity . . . I will investigate! At the moment I may be able to squeak by with a high-output POC that can be powered with the 100 watt outlets that come in most vehicles. The Sienna options is good to look into, though. Good luck and many thanks.

Thank you, Charlene! Still researching . . .

I have been looking into whether I can rent an RV that could produce enough power to run my home concentrator while driving. The idea would be to drive relying on the concentrator rather than on tanks, and to sleep at hotels along the way where you could move the concentrator inside for the evening.

I do not know if this idea is viable, but…

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I agree with temple-mayo!

I have been on OFEV since my diagnosis two years ago. I was diagnosed early, and still have relatively healthy lungs. I have had to learn to give my self latitude with the medicine. There are some days and some situations when it makes more sense to skip doses, and I am trying to be more forgiving with myself about…

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Dear George-Richard,

Thank you for posing this very practical question.

In my father’s final year, at the age of 72 and six years after his IPF diagnosis (pre-OFEV), he was suddenly confined to a hospital bed after an unrelated and undetected blood loss left him profoundly anemic. He had been living at home without oxygen, and doing the best he…

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Hi Bouleveree—

Haha—I wrote so for so long that I forgot to address your specific question about diarrhea. I have had a bout or two along the way, but as my longer note says the side effects have been much more varied than just diarrhea. I saw that you were a brand-new user of OFEV, and wanted to share some things that would have helped me as I…

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Hi there! My own experience with OFEV’s side effects has been variable. After two years of taking the 150 mg dose 2x/day, I have experienced a range of gastrointestinal ailments, and it is hard to know what to expect on any given day.

I would recommend an experimental approach, and develop a routine of consuming a significant amount of protein…

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This is a very helpful thread—thanks to everyone for sharing their strategies!

I am delighted to add Pepperidge Farm’s cinnamon bread to my grocery list. Yummy.

I also want to share my own magic formula, which is Fairlife milk products. Their whole milk and chocolate milk are lactose-free, enriched with protein, and rich in calories. Fairlife…

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I frequently experience painful bloating. I count it as one of the numerous challenges of being on OFEV. I am in an almost constant state of gastric distress, with the symptoms unpredictable and ever-changing: nausea, sometimes with vomiting; aversion to food, cramping, constipation, and bloating. I treat these ailments symptomatically as…

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Hi folks—I am not a doctor, and do not know if my experience will help to reassure Gavin or others, but I know that when my dad’s pulse ox started falling irretrievably to the point where he became panicky, he was administered benzodiazepines as needed, which seemed to calm him, especially during the nighttime hours. This was In the U.S.…

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I have read that OFEV should not be cut. Call the doc or the pharmacy to check me and good luck!

H Vance—

Congratulations on the stable lung reports!!  I really hope you can stay on the 100 mg. dosage twice a day to keep it going.

Your question, and the great success you’ve had protecting your lungs, reminds me of how worthwhile it is to remain on the medicine.  I’ve been on OFEV for IPF for a year and it is a daily struggle—and your… Read more

Hi everyone—

I have been taking OFEV since my IPf diagnosis last year, and have experienced the food aversions, smell sensitivity, and nausea that so many others experience.

For me, ingesting protein at the time I take my OFEV seems like the most important safeguard against vomiting, and I have found that Fairlife milk products meet many… Read more

Hi everyone—

I have been taking OFEV since my IPf diagnosis last year, and have experienced the food aversions, smell sensitivity, and nausea that so many others experience.

For me, ingesting protein at the time I take my OFEV seems like the most important safeguard against vomiting, and I have found that Fairlife milk products meet many… Read more

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… 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… 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… 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… 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… 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… 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… Read more