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  • Bill Mattila and Profile picture of Libby FisherLibby Fisher are now friends 1 month ago

  • 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]

  • 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, but…[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 cu…[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 str…[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 h…[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 to…[Read more]

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