Good to hear Jascayd helps with stomach problems. Someone on this forum mentioned that stomach issues with Esbriet are made worse with raw vegetables (salads) and dairy, which I found to be true.

Definitely yes! iit is mostly light resistance and some walking. very light exercize but you”re monitored. very important! I has helped me.

I just got my first month’s supply, but have not started due to recent surgery. Originally, my part D provider, Wellcare, quoted $1000/months.copay, but I now get it from the VA for no cost as I am 100 percent disabled. It is not on the VA’s “formulary”, but your doctor can argue your case and-override this.

Not exactly true. See my reply to Bill6.

Try Amazon. I’ve bought additional Inogen batteries, chargers and other supplies for half what Inogen charges. They were actually manufactured by Inogen too.

You are correct that pulsed O2 concentrators DO NOT deliver their oxygen continuously, but, as they are pulsed, they only deliver an equivalent amount only when you inhale. Therefore, measuring their flow directly in LPM it would be like comparing apples to oranges. However, they are calibrated to deliver an amount “equivalent” to what you…

Read more

I have been on Pirfenidone for about a year, 3 tablets 3X a day. The side effects seem to get worse over time; however, a few months ago my pulmonologist started allowing me to take a 1 day hiatus once a week from this medication. He said that the side effects can diminish quickly, but the good effects of the drug fade more slowly and I have…

Read more

I had an 8” section of my colon removed in 2022 at 73 then was diagnosed with IPF 6 months later. I could not tolerate OFEV due to very severe abdominal pain that could last for days. I feel the colectomy had something to do with it, but the doctor would not confirm. However, he switched me to Pirfenidone. The side effects are awful, but no…

Read more

This is what I use. You only need a short piece ~6”. Also it is reusable when you change your…

Read more

I was diagnosed with rheumatoid arthritis (RA) in my lungs (ONLY in my lungs!) a couple years ago and have been on Mycophenolate since. First, 1000mg, 2x/day then the dose was reduced to 500mg 2x/day. As I understand this is for the treatment of the RA, not the IPF, but the RA may be responsible for the IPF or at least partly so. RA is…

Read more

I have had an Inogen1 G5 for almost 2 years and love it! There is a graphical indicator on the machines display that shows the remaining % battery charge when the unit is on that is pretty accurate and also LED’s on the battery itself that can only be seen when the battery is removed, but you need to press the green button to activate it. I…

Read more

For batteries and POC’s check Amazon. I bought Inogen 16 cell Li-ion batteries from Amazon for $300 each. Inogen sells them for $600 a pop! I don’t know if anyone makes a 10 l/min POC. My InogenOne G5 only goes to 6 l/min. Paralleling pulsed units would not work. I wouldn’t attempt to parallel anything without the approval of the…

Read more

I’ve been on Pirfenidone for 8 months. My gastro issues include more of a “sour” stomach than pain or heart-burn from acid reflux, which I had for years and know how it feels. However, the discomfort makes me feel like crap all the time. I do get some relief from Pepsid, which my pulmonologist recommended. I’ve heard of others taking…

Read more

Thanks to all who offered suggestions. I try them if I need to go back on Ofev.

Again, good info. Thanks!

Thanks! Good to know! I was on a low carb diet and found after being switched to Perfinidone increasing my carb intake helped with some of the side effects, like dizziness.

Constipation and diarrhea are both published side effect of Ofev an Pirfenidone for which I take Miralax and Metamucil daily to control, but the pain when on Ofev was as bad as any diverticulitis attack that I have experienced.

When I was on Ofev, it was 100mg tablets, As I recall 3x a day with the prescribed ramp-up. I have suffered for years with diverticulitis and had a colectomy that removed 8” of my colon 2 years ago. I currently have no symptoms of diverticula disease, but may be more sensitive. I have read that abdominal pain is a side effect of Ofev and in…

Read more

About a year ago my pulmonologist put me on Ofev with the usual ramp up to the full dose. Not long after reaching the full dose, I started experiencing severe, abdominal pain that was completely debilitating, but not quite enough to require me to go to the ER and no blood. The first bout lasted a day others would last as much as 3 days…

Read more

I was on Ofev for about 6 months and bounced between diarrhea and constipation constantly. I mostly daily used Miralax for the constipation and Metamucil for the diarrhea (sounds strange, but that’s the way it works with me) and other stronger laxatives and anta-diarrheals as needed. The Ofev appeared to improve my lungs as seen in CT scan and…

Read more

No to your 4 questions although I have been on aspirin for years and was briefly on Esbriet. I was diagnosed about 1.5 years ago with a lung biopsy, but my IPF came on suddenly possibly 6 months earlier. I have tested positive for blood markers for rheumatoid arthritis, but it is only in my lungs. I play the guitar and have no joint…

Read more

United Technologies or United Therapeutics? I worked for United Technologies for 28 years. A huge mostly aerospace conglomerate, but I don’t believe they ever made pharmaceuticals. They sold off most of their businesses several years ago to Raytheon.