Libby Fisher

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 had…[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 Mir…[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 spo…[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 wit…[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 bronchitis…[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 you…[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 des…[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 eas…[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 i…[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 planet…[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 di…[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 p…[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 co…[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 do…[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, as…[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 Go…[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 y…[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 in…[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 o…[Read more]