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  • 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]

  • 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 no…[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 goo…[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 most…[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 fi…[Read more]

  • Libby Fisher posted a new activity comment 6 months ago

    Thank you Mark. I’m really happy to find the forums and find so much information, suggestions for coping and succeeding ! I haven’t even received my first Ofev shipment yet, after a switch between specialty pharmacies who are approved by my insurer. Lots to learn and I’m glad for all the ideas here!

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