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    • I purchased IQAir Medical-Grade Air – Allergies, Pets, Asthma, Odors, Smoke, Pollen, Dust; Swiss Made.
      That was about 2 years ago. use it in the bedroom only. I also have 3 dogs. They contribute to breathing issues, but not so as I want to do away with them. I can say I have not seen a significant increase in air quality. Keeping the air furnace f…[Read more]

  • Jim Dawson posted an update 1 year, 9 months ago

    Well, I’m still on Mycophenolate Mofetil, but now taking 500 mg-6 tablets per day along with 10 mg of Predisone. That has helped reduce the coughing and to some extent the fleim buildup in my chest from overnight sleeping. Without using oxygen my levels drop to 79% when walking. So, reluctantly I will wear oxygen. My main gripe about that is when…[Read more]

  • Well I have been on a medication for two weeks now called Mycophenolate Mofetil. It is 500 mg-2 tablets per day. I believe it has helped with the coughing slightly. According to the label it is used for lung transplants. However I had not had any lung transplants. And I have not really been on the medication long enough to reach whatever…[Read more]

  • Well, I was sick for quite some time, but after being on Ofev for 2 months, they took me off of it. in the last two weeks I did more blood work, and they are sending me another pill. I haven’t received it yet, but I believe it is another anti-inflammatory medication along with 10MG of Prednisone. Oxygen levels, walking without oxygen drops the…[Read more]

  • Jim Dawson posted a new activity comment 2 years, 8 months ago

    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]

  • I went to the Veterans Administration today. I told them no lung biopsy, as the outcome has a 30% failure rate and a 2% morbidity rate. That is not good odds in my book. He also said there is a 6 week recovery rate. He also said, it really depends on the negative effects, whether or not you want more abdominal issues or upper GI issues. I chose…[Read more]

    • 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]

  • @sandravanzyl
    Thank you for the information. I told the Dr. I was very apprehensive concerning the lung biopsy. He is my second opinion Dr. as I was told to get off of predisone before they could do the biopsy. With a 30% chance of nor finding out what type of Pulmonary Fibrosis I have, just seems too high. Then there is a 2% death rate on…[Read more]

    • Hi Jim, I was apprehensive when that doctor wanted to get a 2nd opinion , after many visits I finally relented and agreed (my pulmonary function was getting less) and this is when I met Dr DeBoer and she adamantly said NO to another biopsy! YAY! I’ve been dealing with this nasty gagging cough for over 15 years and I just feel so many doctors…[Read more]

    • 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.

  • Jim Dawson posted a new activity comment 2 years, 8 months ago

    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]

  • Jim Dawson posted a new activity comment 2 years, 11 months ago

    About a year ago I had difficulty breathing. My primary physician sent me to a Pulmonologist who had me do a month apart breathing exams. From that determination I was put on Predisone, and PF is the diagnoses as the doctor decided I had inflammation of the lungs. Two months later I had a lung infection which I was prescribed an antibiotic. The…[Read more]

  • Jim Dawson posted a new activity comment 2 years, 11 months ago

    Just to let you know, The only pill I am on is Prednisone. 20 Mgs in the morning. I use oxygen primarily upon exertion, and overnight. My concern is there are four different types of medications for IPF, and non of the medications have been prescribed. Should l be looking for a different Pulmonary doctor.

    • 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]

  • Jim Dawson's profile was updated 2 years, 11 months ago

    • About a year ago I had difficulty breathing. My primary physician sent me to a Pulmonologist who had me do a month apart breathing exams. From that determination I was put on Predisone, and PF is the diagnoses as the doctor decided I had inflammation of the lungs. Two months later I had a lung infection which I was prescribed an antibiotic. The…[Read more]

  • Jim Dawson became a registered member 2 years, 11 months ago

    • Hi Jim, thanks for joining the PF forums. Welcome!

      • Just to let you know, The only pill I am on is Prednisone. 20 Mgs in the morning. I use oxygen primarily upon exertion, and overnight. My concern is there are four different types of medications for IPF, and non of the medications have been prescribed. Should l be looking for a different Pulmonary doctor.

        • 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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