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    • #27313
      Byron Vogel
      Participant

       

      I was diagnosed with IPF  in 2017 and using 100mg of OFEV twice daily. I have been advised I  am no longer

      elgible for Ofev assistance program.  Now wonderng if anyone has had success purchasing the product direct from India.

      Would appreciate any information. Really appreciate the News letter and other participants input.

      Byron

    • #27502
      Mark Bowden
      Participant

      @byronvogel

      Hello, Byron – I recently was prescribedOfev and am also interested in foreign sources for this highly expensive medicine.  I see online that an India pharmaceutical co. has its on version of nintedanib.  I don’t know there is much difference in price. Still exploring. Meanwhile,  what happened that you are no longer eligible for assistance? I am looking into assistance, but wonder what good that will do me if I’m cut off down the road.  Any insight appreciated. Thank you, Mark B

      • This reply was modified 3 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #28198
      Mark
      Participant

      I am supposed to start on this med soon. Does it work well? My doctor  said that I  will need a transplant at some point soon.I  hope that this will buy  me some time. Thanks for the input.

      • #28208

        Hi Mark,

        Thanks so much for writing us about Ofev. Have you started it yet and how is it going? I was on this drug too and was really discouraged at first due to the GI side effects. I had to go off it twice and then titrate back onto it, starting at 100mg twice daily and then going back up to 150mg twice daily before I could tolerate it. It was tough, but I was able to get it and believe it has helped. I also carry the Imodium *sublingual* tablets everywhere with me! These dissolve under your tongue – no water needed – and I find them so much more effective in combating any GI issues than the oral tablets. Not sure if this helps?
        Take care,
        Char.

         

    • #28215
      Jim Parsons
      Participant

      I checked the price of OFEV from India and the full price is less than the co-pay I am paying in the US. My concern is in shipping. During the summer the specialty pharmacy sends it in an insulated container with ice packs. I am sure it would not get the same care coming from India.

    • #28216
      Bruce Hawn
      Participant

      My understanding is that you lose your eligibility to participate in their co-pay program, once you go from private insurance to Medicare.  Have to be privately insured.  Not sure why, but am sure that is one of the ways, maybe only way, you lose eligibility for the OFEV copay program, other than cancellation of the entire program.

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