Pulmonary Fibrosis News Forums Forums Treatments and Science Ofev (Nintedanib) Use of medications bought from other countries

  • Charlene Marshall

    Member
    April 16, 2020 at 4:17 pm

    @westds01

    Hi Robert,

    Wow, thanks so much for sharing! I am also on Spiriva and it is an expensive medication, but the Canadian health insurance and my employee insurance does cover most of it. Glad you were able to obtain it and Advair from a Canadian pharmacy for awhile, but the Trelegy sounds more convenient (one drug for both) and cheaper! That is great, and way to go for finding a solution that works well for you. Glad you’re now starting to be active, that is great for our mental health too. 18 years – wow! Keep going, you’re an inspiration.

    Take care,
    Charlene.

  • Gregory Dixon

    Member
    April 21, 2020 at 4:15 pm

    @randy-miller

     

    Randy,

    Are you on Medicare? If so, Medicare civers about 80% of the cost, just under $10,000 per month. Someone from Open Doors referred me to the HealthWell Foundation. In one phone call, they approved a $9000 grant to me (for a year). Miraculously, the remainder of my copay disappeared and I pay nothing for my Ofev, which I started last week. So far, no problems at all.

     

  • Paul Sanchez

    Member
    July 28, 2020 at 10:54 am

    The Physician’s Assistant (Hereto after using the acronym: PA), said she’d be surprised if my Dr would prescribe anything from India. Do the drug companies have this locked up too?

    (I guess I’m becoming more and more of a conspiratorialist).

     

    Paul

  • Rebecca Schrantz-Lilly

    Member
    July 28, 2020 at 11:21 am

    @paul-sanchez

     

    Paul,

    My husband’s Pulmonologist did write a prescription because he knew all about the generic from India and people suffering from PF were using the generic before the FDA approved Esbriet.  He knew we were unable to get the insurance company to pay for it, programs were not people like us who had savings but never considered the fact that at $10,000/month, that would wipe us out.  After being wiped out, then we could be on the program.  It can not hurt to at least try if you have tried everything else.

  • Paul Sanchez

    Member
    July 28, 2020 at 12:30 pm

    I did try. Just waiting on Dr’s response. I also found out that if  Dr administers meds from an office medicare part N would cover the cost! I asked he Dr about that issue as well.

    Tnx

  • Gregory Dixon

    Member
    July 28, 2020 at 1:36 pm

    I recommend that you read Bottle of Lies by Katherine Eban. It is a thoroughly researched volume on the generic drug industry with particular emphasis on India and China.

  • Rebecca Schrantz-Lilly

    Member
    July 28, 2020 at 2:14 pm

    I hope that you hear good news! It is hard enough dealing with this disease to only add the stress of how you can pay for it.

  • Carol Carmack

    Member
    July 30, 2020 at 1:25 pm

    I have been taking Ofev since about February 2020. I too could not pay the price they wanted, “they” being Boehringer Ingleheim and the price $2500 per month. So I called them and was able to arrange to receive it free of charge. I don’t recall whether I had to fill out forms or not, but they can tell you. I don’t know their location but the larger portion of any medicine we have in the U.S. is manufactured in China. I believe the Trump administration is working on bringing that back to the U.S. though.  Ive had a very hard time acclimating to the drug. It was no problem until about three months in. I quit taking it for two or three weeks then restarted it and tried a couple of changes that have eliminated the problem so far. Been back on the med only about three weeks though. I eat a couple of bites of sauerkraut before taking it (it is either a pre or probiotics I understand) then make sure I drink at least six to eight ounces of water. I had lost my appetite previously and wasn’t eating much of anything. So far now I have a pretty normal appetite so I make sure to eat before taking the med.

  • Thom

    Member
    July 30, 2020 at 2:12 pm

    BOEHRINGER INGLEHIEM has their main office and some laboratories located where I live, Offices in Danbury and Ridgefield,  CT

     

  • Mark Koziol

    Member
    July 30, 2020 at 6:59 pm

    Hello Carol, thank you for the suggestion of eating sauerkraut. I never thought about that food but when you bring the pre and probiotics into the equation I think you may have come across a gem of a find. The scientific base for this makes a lot of sense. Thank you, Mark.

  • Piet Potgieter

    Member
    July 31, 2020 at 12:16 am

    Nothing wrong with Cipla´s generic of Esbriet made in India. I have been taking it for the last 3 years. Now we may not import it any more as Boeringer Ingleheim registered their Ofev in South Africa and it is unaffordable, even for my medical insurance.   Therefore,  Boeringher Ingleheim are effectively passing the death senctence on to all South African ipf sufferers.  I wrote to their office in Johannesburg, but no reply.

    Our currency, the rand, used to be worth more than the American dollar. Now it is 7 US cents. You can guess why,

  • Charlene Marshall

    Member
    July 31, 2020 at 1:56 pm

    Oh Gosh, Piet: will you still be able to obtain the generic version of Esbriet you’re on? I hope so!
    Charlene.

  • Rebecca Schrantz-Lilly

    Member
    July 31, 2020 at 8:06 pm

    There is no way to import it?  You are absolutely right. There is no problem with the Pirfenidone(generic version of Esbriet)that my husband was on for 4 years.

  • Jim Parsons

    Member
    March 19, 2022 at 7:48 am

    I know BI manufactures OFEV in India but I have one question about buying it from there. OFEV is a biologic.  I live in South Carolina and it can be quite hot in the summer. I understand that OFEV is sensitive to temperature.  In the summer it is delivered in a styrofoam container with ice packs to keep it cool. How can a controlled temperature be maintained if shipping from India?

     

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