Forum Replies Created

  • vandana

    Member
    July 19, 2023 at 5:45 pm in reply to: Pirfenidone from India

    Oops many months late.

  • vandana

    Member
    July 19, 2023 at 5:44 pm in reply to: Pirfenidone from India

    Hi Graham,
    I did this when I was first started on Esbriet while awaiting insurance approval. 267 mg tabs at 3 tabs per day for a 3 month supply costs only about $80!!. These are genuine and I titrated up with these and switched over to Esbriet once I got it through insurance. Last time on my trip to India I ran short and had to use Pirfenidone from there.

  • vandana

    Member
    June 16, 2022 at 2:32 pm in reply to: When should you start antifibrotics?

    Apologies for the duplication in my previous post, somehow dictation is showing up twice

    Vandana

  • vandana

    Member
    June 16, 2022 at 2:29 pm in reply to: When should you start antifibrotics?

    Hello all

    my name is Vandana and I was diagnosed last year although my CT scan showed something towards the end of 2019. My doctors are still not sure of the diagnosis but based on my genetic testing think I have IPF. My pulmonologist at Stanford recommended I start medication in December last year but I waited till I had undergone my shoulder replacement this year.I have too many medical problems such as moyamoya disease, avascular necrosis and a lot others mostly rare diseases.

    I have too many medical problems such as moyamoya disease, avascular necrosis and a lot others mostly rare diseases.

    I’m glad to be on this forum. My insurance denied Esbriet So I am now taking the generic version had my doctor had me ramp up very slowly with one tablet for a few days then increasing to twice a day then building to three times a day. Taking it with food helps and minimizes the G.I. symptoms.

    I’m not a candidate for ofev because of the risk of bleeding especially with moyamoya disease. I am 57 but grateful to be here and hoping I will be around for a few more years. Due to all the other major problems I have had I am not afraid of dying but I am afraid of suffering. So I take it one day at a time and try to do the most I can and enjoy myself.

    Starting medication early would be the right idea.

    starting medication early would be the right idea.

    Wish you all the very best

    Vandana from California