• Dear Charlene and John,

    In desperation, I got some friends who went to China to get Breathemax.
    I emphasized N115 and sodium pyruvate. 3groups- All drew blank.

    Breathe max is available but it is antihistamine and steroids for sinusitis and rhinitis. No mention of sodium pyruvate or N115. Definitely not for us.
    I continue to wait and search. I…[Read more]

  • Dear Charlene,
    I will certainly let everyone know when I get it and the results as well.
    With warmest regards,
    May Mya Win

  • May Mya Win replied to the topic Sodium Pyruvate in the forum Clinical Trials 5 months ago

    Dear Charlene,

    I have followed the link provided by John Styles
    and I am also interested in the sodium pyruvate inhaler.

    My PFT has steadily declined since IPF was diagnosed.
    I feel quite breathless on effort ao that I have to use my portable oxygen concentrator when I do my chores.
    If the claim about sodium pyruvate is true, I would like to use…[Read more]

  • Dear Charlene,

    I changed from Ofev to Esbriet because I could not tolerate the Ofev.
    I have been on the maximum dose of Esbriet now for 9 months.

    When I saw my doctor in early August this year, my function test was almost the same but the gas exchange DLCO was down from 45% to 39%. There was more fibrosis on X-ray This was reflected in my oxygen…[Read more]

  • Dear Charlene,

    Thank you for the information about LTI-03.

    This is really an exciting- a ray of hope. So very encouraging if successfully produced and available.

    “This LTI-03, was very effective in preventing and then actually reversing fibrosis”, says Dr. Idell.

    None of the agents I know does that. They just prevent fibrosis so the con…[Read more]

    • Hi May Mya Win,

      Thanks so much for the update, it is always nice to hear from you!

      Yes, I am really glad that John introduced the laser therapy discussion a few months back, the conversations have really taken flight which seems to be helpful to so many! Glad you’re finding it hopeful, will you get a chance to try it do you think? I haven’t…[Read more]

  • Dear Charlene

    Respiratory tract infection is bad news.

    It is indeed true about diet. I was not having a good appetite and the result was that I developed a chest infection and I am now on antibiotic injections.

    A friend pointed out to me that having to avoid the sun because of the fear of photosensitivity reactions could make me deficient in…[Read more]

  • Dear Megan,

    Thank you very much for your advice.

    It is indeed true about diet. I was not having a good appetite and the result was that I developed a chest infection and I am now on antibiotic injections.
    I am still trying my best to eat more. I look forward to a stronger me.

    A full dose of Esbiret did not help in this matter. But I have to…[Read more]

  • Dear Charlene,

    I am grateful for Megan’s candid account of her dad’s last days.
    At least he lived longer than the given 3-5years. Thanks to Megan largely.

    I am in the 2nd year post-diagnosis now and although I know that the course is progressive deterioration, I have put myself on ‘survival mode’. Struggle I must.

    I want to know whether he was…[Read more]

  • Dear Charlene.

    I was diagnosed as having PF for about a year.

    Antifibrotic agents were withheld initially because my doctor suspected autoimmune disease. Other medications were tried first.

    My condition deteriorated – respiratory tract infections contributed to this.

    50%of my lungs were gone from the initial 69%reduction. Antifibrotics were…[Read more]

  • May Mya Win posted a new activity comment 1 year, 2 months ago

    Dear Charlene,
    Thank you for your concern.
    Thank goodness I can tolerate the other antifibrotic. Since both medications had liver dysfunction as side effects, I wondered whether I could tolerate this one.
    What a relief! I now feel that I will live a little longer.
    With all good wishes for your health and the health of all IPF patients,
    Warmest…[Read more]

    • Love hearing these types of updates @maymyawin! I am also very thankful you can tolerate this medications, and that you’re feeling more hopeful and relieved. Hang onto that, it’s important 🙂

      I hope you had a wonderful weekend!
      Charlene.

  • Dear Charlene,
    I have been reading the news but did not go online because I was waiting to see what my liver function would be with the new medication pirfenidone.
    Having tolerated the two tabs three times a day, I am now on the maximum dose of three tabs three times a day. I noticed an improvement in my minimum heart rate. I am more active. I…[Read more]

    • Hi @maymyawin,

      Thanks so much for providing this update, and letting us know how you’re tolerating the Esbriet. What wonderful news that you’ve noticed an improvement in your heart rate and that you can be more active since starting it. That is great, as I know it can be a tough medication for people to tolerate, especially at the maximum dose…[Read more]

      • Dear Charlene,
        Thank you for your concern.
        Thank goodness I can tolerate the other antifibrotic. Since both medications had liver dysfunction as side effects, I wondered whether I could tolerate this one.
        What a relief! I now feel that I will live a little longer.
        With all good wishes for your health and the health of all IPF patients,
        Warmest…[Read more]

        • Love hearing these types of updates @maymyawin! I am also very thankful you can tolerate this medications, and that you’re feeling more hopeful and relieved. Hang onto that, it’s important 🙂

          I hope you had a wonderful weekend!
          Charlene.

  • May Mya Win posted a new activity comment 1 year, 3 months ago

    Dear Charlene
    Thanks for your interest.
    I am tolerating the new medication.
    I hate having to avoid the sun. I have to stick to the rules though.
    My first liver function test at the end of one week was acceptable. The dose has to be increased and I hope my liver will not complain.
    I have no tummy discomforts so far and I am keeping my fingers…[Read more]

    • Hi May Mya,

      Thanks for getting back in touch and letting me know that you’re tolerating the medication as well as possible. I’ll keep my fingers crossed that your liver numbers tolerate the increase in the medications, and that your side effects remain minimal. Sorry you have to avoid the sun – that is tough as I am a sun-seeker as well!

      Take…[Read more]

  • Started on Ofev on 13 August.
    Too soon to tell

    • Hi @maymyawin, welcome again to our PF forums and thanks for sharing this update with us regarding Ofev. I hope you haven’t experienced any unpleasant side effects as a result of starting the drug? It does take some time to notice / measure if it is making a difference in terms of lung function. Hopefully this will be reflected in your next…[Read more]

  • May Mya Win became a registered member 1 year, 6 months ago

    • Welcome to the PF forums May Mya, thanks for joining us!

    • Hi @maymyawin. thank you so much for the update although I’m sorry to hear the Ofev didn’t pan out well for you. How is the Pirfenidone going for you, are you tolerating it a bit better and waiting to see how your liver tolerates this anti-fibrotic? Holding you close in my thoughts as you transition on this medication and hoping it works for you.…[Read more]

      • Dear Charlene
        Thanks for your interest.
        I am tolerating the new medication.
        I hate having to avoid the sun. I have to stick to the rules though.
        My first liver function test at the end of one week was acceptable. The dose has to be increased and I hope my liver will not complain.
        I have no tummy discomforts so far and I am keeping my fingers…[Read more]

        • Hi May Mya,

          Thanks for getting back in touch and letting me know that you’re tolerating the medication as well as possible. I’ll keep my fingers crossed that your liver numbers tolerate the increase in the medications, and that your side effects remain minimal. Sorry you have to avoid the sun – that is tough as I am a sun-seeker as well!

          Take…[Read more]

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