I attended pulmonary rehab this past summer (June -August 2025). I found the exercise portion of the classes very helpful. But sadly, I think because of the more rural location of the hospital center, there were many others in the class who had very limited nutritional information…so that part of the class was not worthwhile for me. …

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For all who are interested in learning more about these supplements and making sure you are taking what will be safe and also highly effective, I am linking Sean Tully’s Journal from Dec 3. He goes into detail about the drug trials and links many studies while also listing steps he has taken to improve his health outcome. I am now taking…

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I am thankful for all of the suggestions here. I’m brand new to needing a POC (lucky me, right ??!🙄) and don’t know anything about best sources for accessories. I quickly discovered that the 7 ft tubing that came with my unit (Inogen Rove 4) is way too long and would like to know where you buy the 4 ft. I’m not confident about buying…

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My experience (in 2020 when I started on Ofev) was that I could not tolerate the 150 mg dose.. it made me feel like I had the flu… absolutely awful. I am a small woman, under 130 lbs. Fortunately I switched to a physician at the U of MN who does a lot of research and she assured me that many smaller-in-size patients cannot tolerate the…

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I am very interested in this and thank you all so much for introducing this subject!!

When I had an exacerbation last summer, I started using a Target brand cough syrup with DM and Guaifenesin. It worked SO well and got me through the worst of a bad infection that I continued taking a small amount each night at bedtime.

I just searched on…

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I do not have IPF but my ILD (hypersensitive pneumonitis) results in my having similar issues. I had an exacerbation in Jan ’23 after being quite sick with a bad virus that was going around. Lots of coughing that wouldn’t go away. My shortness of breath was acute. I ended up on Prednisone for several months. Then in the Spring of ’24…

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I have slept in an elevated position for many years, way before getting an ILD. It helps prevent acid reflux and definitely helps with my post nasal drip. My new pulmonologist confirmed that he thinks it’s very important. My method is to find a reasonably flat pillow to “start the incline”…I found a memory foam one on Amazon that is…

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I have been on Ofev for 4 years now. My first pulmonologist was insistent I ramp up to the 150 mg after a few months but I could not tolerate it. I had the symptoms you are describing. Sometimes I’d wake up feeling like I had a stomach flu. My new physician at the U of MN said that I did not need the 150 …it is too much for a small person…

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I have been on Ofev for 3 1/2 years, mostly 200 mg/day. I tried several times to take the 150 mg tablets but they not only gave me nausea and diarrhea but also raised my blood pressure quite a bit!! So I am staying with 100 mg twice a day and the one saving food/supplement I take regularly is fiber. I take Citrucel or Metamucil (or…

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Re waiting 12 hours between doses of Ofev : I wanted to pass along the guidance given by my previous pulmonologist at the U of MN (she is head of dept, a researcher and professor so I really trust her analysis and advice). She said the 12 hour time span between doses of Ofev is not absolute at all. There is flexibility and I find my evening…

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Hello everyone,
I have had ILD for 5 years now. I had an endoscopy 3 years ago when my stomach was really acting up (starting on the Ofev!) and a hiatal hernia was diagnosed. My GI doctor said that about 65% of people over the age of 55 develop this type of hernia…so it is extremely common and she did not think (in my case anyway) that it… Read more

My husband and I (both in our 70’s) like to travel a lot!  I do not have IPF but have Hypersensitivity Pneumonitis.  I have been on Ofev 2.5 years and think I have a decent routine now for dealing with possible symptoms.  One (which others have mentioned) is some kind of fiber..whatever works best for you.  I take a small amount (1 tsp) of… Read more

I have been on two inhalers since I was diagnosed with IPF .   I really appreciated Richard Shelby’s explanations (which my pulmonologist is terrible at).  I take Arnuity Ellipta inhaler and also Ventolin once a day.  Once in a while I have an asthmatic-like response to coughing or an irritant in my throat and need to use the Ventolin on the… Read more

Hi Carol.  I have not heard of Ofev being related to shifting teeth.  But my experience over the past 15 years (way before IPF and Ofev)  has been that my back molars occasionally move back and then they realign, probably because the wisdom teeth were removed years ago so there is nothing to block the movement.  I have recently had an issue… Read more

Hi Charlene,
I hope I can help a little with your asthma-IPF question from my experiences. I never had asthma until I had a bad case of bronchitis ages ago, at which time my primary gave me an inhaler. Then years went by with no incidents at all until a couple of years before my IPF diagnosis, I began to have more frequent bouts of… Read more

Sorry, I forgot the last question you asked about remedies…  A lot of people recommend the neti-pot or neti-squeeze bottle to flush you nasal cavities with a sterile saline solution.  I never found good results and it often made my ears more clogged.  I have found a natural nosespray on Amazon that really works!  It clears everything.. if… Read more

I am going to go with Jean-Michel’s philosophy!!   I never drank much at all until my 50’s and haven’t had hard liquor since college.. no going to martini bars for me!   But my husband and I LOVE wine and derive much pleasure from sampling different types of Italian and Portuguese wines (mainly because those countries are our frequent travel… Read more

Hello everyone on Ofev.   I really appreciate being able to read others’ experiences with this very difficult drug.  I started on it last April at 100 mg, then progressed to 150 which I was able to tolerate for about 4 months…only because I took occasional time off to give my digestive system a chance to heal .  But it really never got any… Read more

Hi Charlene,

I have had problems with dizziness for a long time.  Sometimes I get the Benign Positional Vertigo where I can’t turn my head quickly… I perform the Epley maneuver a couple of times which gets the offending crystals to reposition themselves in the ear canal.  I think BPV is one of the most underdiagnosed causes of dizziness and… Read more

In reply to Carol Rubin,

I’m sorry to hear you’ve joined our ranks…no one wants that diagnosis of IPF!!  I started on Ofev last April and went through the same channels to try to gain some kind of financial support. My pulmonologist was just certain that the drug company would practically give it away if I only asked — not sure what… Read more

I wanted to respond to this thread about weighing risks and benefits during covid.  My husband and I (both in our early 70’s) recently flew from Minneapolis to Baltimore.  I had not seen our daughter and her family since Feb and I really couldn’t stand it any longer.  I could tell I was getting really down, not smiling much, not caring what we… Read more

Re Imodium Melts

Unfortunately the only products available on Amazon are Imodium caplets or gel tabs…both of which must be swallowed.  There is no Imodium product that is a sublingual melt, except those advertised by British or Canadian drug order companies.  I am suspicious that it has something to do with the recent more strict controls on… Read more

Suzy — I have found that having milk (even the lactose-free) with the Ofev made my stomach hurt more.  I switched to original Almond Milk and that solved it.  Small amount of cereal with plain yogurt and plenty of fruit including banana- – that’s my go-to breakfast.  I second Mark’s recommendation for peanut butter…For snacks I often have a… Read more

Well, here’s the answer re ordering from Amazon.ca — some things may ship to the US but not everything.  We tried ordering the product just to see if it worked and it said “this cannot be shipped to this address”.  It must be provided by a seller in Canada who does not want to incur the costs of shipping to the US.  That’s okay … I’ll make… Read more

Thanks so much Charlene.  We have never tried ordering from another country’s Amazon site.. but it is nice to have this link in case I do find that I need to go that route in the future.   For now, I feel like the regular Imodium works well.. I do have a day or so each week where I feel like I’m “on the edge” all day… not a pleasant feeling,… Read more

Thanks Charlene… I feel fortunate that I don’t need Imodium every day… maybe 2 days a week.  The other days I’m managing okay with the peppermint gels, probiotics and also Pepto Bismol tablets.  I have tried Amazon for the instant melts and did not see anything except the regular Imodium.. same thing for drugstores and Target.  The only… Read more

Re the Instant-melts Imodium.. I have searched online, at local pharmacies and at Target and they do not seem to be available in my area, or maybe even in the US at all.  I’ve seen British and Canadian websites but even on those sites, customers are lamenting that they cannot find them.  Has anyone found them readily available in the US?

Thank… Read more

I have been taking the equivalent of 600 mg EGCG for over 2 months now.  I chose the NOW brand because it is almost completely decaffeinated and also because it spells out the exact mg of the catechin on the label which was not so  obvious with other brands, especially ones that just call themselves Green Tea Extract.  I am finding confusing… Read more

Hi Mona,

I thought I would try to offer some help in response to your note about natural supplements that could help the Ofev associated diarrhea.  I have only been on Ofev for 3 months so things that help me now might not work a year from now.  But I have come to the conclusion that each day presents a different situation and I can’t figure… Read more

Hi Thom and Karen..  I am getting my Ofev from Accredo.. they have very good customer service, but I sure haven’t gotten a break of any kind.  I am paying $550 per month …that’s my Medicare co-pay.  The first two months we were in the “donut hole” and had to pay over $2000 per month.  Outrageous is an understatement.  The $550 is tolerable,… Read more

Re purchasing Ofev from India:  I did a quick search on the forum site and it brought up our thread a few months ago on this issue.  The posting from Thom indicated he had an Indian doctor when he was first diagnosed who alerted him to this possibility.  Thom, if you are on the forum, would you please offer any additional information .. Are you… Read more

Hi Karen,

I am new to IPF and Ofev myself.  I am just starting my 3rd month of being on Ofev.  I can tell you that it’s still really expensive even on Medicare — my copay is just over $500 per month which is outrageous.  We can only hope that some politicians in our future will take on Big Pharma and  their lobbyists and break their… Read more

Hi Kathy,

I was so interested to read your note about your physician recommending a fiber supplement to help counteract the diarrhea.  I have had episodes of IBS for a number of years and I used to take fiber all the time.  Since I haven’t needed it lately, I completely forgot that it can be very beneficial to slowing down your digestion and… Read more

Charlene,

Thank you for that reminder about the sublingual Imodium.. Can you purchase it right at the drugstore or Target kind of store?   I get the picture from all the various postings that living on these drugs is a constant adjustment process!  And everyone’s reaction is completely different and we all have such different symptoms from day… Read more

One more thing to add to my post about preventing or combating diarrhea.  My pulmonologist told me to not be afraid of taking the Imodium.  She said to start out taking it regularly and then see how I reacted.  So for the first 3 weeks, I have taken 1/2 Imodium with each OFEV and it has worked really well for me — no diarrhea at all – – it has… Read more

I am wondering how common it is for the OFEV to cause blood pressure to rise?  I’ve been on OFEV just about 3 weeks now and in the past 4 days, my BP is going up.  It’s the weekend so I’m not going to panic and call urgent care .. .just took some baby aspirin and will contact the doc on Monday.  But is this common?  My BP has been in a very… Read more

I have been taking OFEV 100 mg for 3 weeks and am doing better than I anticipated.  I normally have a very sensitive stomach, so I was prepared for the worst — stocked up on plenty of Imodium, saltines, gingerale, etc etc. I think because I have dealt with IBS in the past, I might be a little more familiar with helpful supplements than… Read more

Thanks for the helpful hints!  I’ll let you all know how it’s going soon!

I will be starting OFEV this week.  Of course I am a bit anxious just thinking about all the potential side effects, but I want to get going on the drug so that I can get into a routine, know what foods work best, etc.  My doctor is starting me out on the lowest dose possible, just 100 mg once a day, to make sure I tolerate it.  Does anyone… Read more