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  • Charlene Marshall posted a new activity comment 2 years, 3 months ago

    HI @jim-dawson,

    Nice to hear from you, thanks so much for connecting! I’ve not heard of that medication, was this something your GP or pulmonologist put you on? Something to keep in mind if it is helping with your cough, as mine is seemingly getting worse over the past few months. Is the intention of this drug to help with the cough, or combined…[Read more]

  • Charlene Marshall posted a new activity comment 2 years, 7 months ago

    Hi @jim-dawson, thanks for your reply and sorry for the delay in getting back to you.

    Glad you feel as though you have a bit more direction after utilizing the forums! Unfortunately, I don’t have any experience of being on both OFEV and Prednisone long-term anyways, as I don’t think I’ve been on prednisone after starting OFEV. Lots of people have…[Read more]

  • Charlene Marshall posted a new activity comment 2 years, 8 months ago

    Hi @jim-dawson, so sorry for the delay in responding – usually when forum members post updates, I don’t receive a notification to know to respond. I only get that when they reply to a current topic in the forums, so my apologies that I didn’t get back to you before now!

    What was the VA response to your stating no to a lung biopsy? Hopefully they…[Read more]

    • At least now I have a sense of direction. If the medication is too powerful for me I will ask to go back to Predisone. Has anyone been on either of the two pills, Esbbriet or Ofev along with Predisone. No apologies needed for me. Thank you, however in answering my concerns. I am assuming if the Esbriet works I’ll be on it indefinitely. Every one I…[Read more]

      • Hi @jim-dawson, thanks for your reply and sorry for the delay in getting back to you.

        Glad you feel as though you have a bit more direction after utilizing the forums! Unfortunately, I don’t have any experience of being on both OFEV and Prednisone long-term anyways, as I don’t think I’ve been on prednisone after starting OFEV. Lots of people have…[Read more]

  • Charlene Marshall posted a new activity comment 2 years, 8 months ago

    Hi @jim-dawson, I just corresponded with a wonderful member of the forums by responding to his post about lung transplantation. In his opening, @les-viegas shared that he had a lung biopsy to get his diagnosis. Might be worth it to try and reach out to him directly to hear about his experience? Was just thinking it might be helpful 🙂

    Cheers,
    Charlene.

  • Charlene Marshall posted a new activity comment 2 years, 8 months ago

    Hi @jim-dawson

    I don’t know too much about the experience of having a lung biopsy, although I do know it is a very individualized choice given the risks and the uncertainty of actually determining what type of lung disease a patient has. I know of some patients who’ve gone through it without any issues, and others who have had a lot of trouble…[Read more]

  • Charlene Marshall posted a new activity comment 2 years, 11 months ago

    Hi @jim-dawson, thanks for sharing this with us and connecting on the PF forums! Hmm… this is hard to say, how long have you been on the Prednisone and were you put on it in response to inflammation, infection, an exacerbation or some other type of respiratory event that took place? Usually Prednisone is given in response to something happening…[Read more]

    • Now I am off of Prednisone, the doctor want to a lung biopsy. My understanding is there is a 30% chance they will not be able to determine the type of fibrosis i have. And he will not prescribe any other medication without doing the biopsy. After having been on Prednisone for 2 years, my concern is the long term effect. I have noticed additional…[Read more]

      • Hi @jim-dawson

        I don’t know too much about the experience of having a lung biopsy, although I do know it is a very individualized choice given the risks and the uncertainty of actually determining what type of lung disease a patient has. I know of some patients who’ve gone through it without any issues, and others who have had a lot of trouble…[Read more]

      • Hi , I had a lung biopsy done in 2015 at the same time that I had hernia surgery ….apparently the lung sample the doctor removed looked fine but they wish they had a larger piece of my lung , this is how the ball got rolling because almost 2 years later my doctor kept pressing for me to do another lung biopsy and I finally relented and said yes…[Read more]

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