• Posted by Charlene Marshall on November 19, 2019 at 9:51 am

    A popular topic among our forum members is the nagging, dry cough that often accompanies a diagnosis of idiopathic pulmonary fibrosis (IPF). For some patients, this cough can drastically lower their quality of life and contribute to muscle pain, fatigue and even cause difficulty in social situations when others assume the cough is contagious. While there are many unstudied theories that certain medications suppress or reduce the cough, such as a Gabepentin, wouldn’t it be great if there was scientific trial through a credible biopharmaceutical company dedicated to trying to treat the IPF cough?

    While I was attending the PFF Summit in San Antonio last weekend, I was privileged to spend time with some of the staff from Respivant. This biopharmaceutical company has launched a study, currently in phase 2, called the Scenic study to address the IPF-related dry cough. They are currently recruiting for more participants, which you can read more on HERE or by calling: 1-800-993-9964.

    Even more information can be found here.

    If you struggle with the pesky IPF-related cough, and want more information please feel free to connect with me directly or contact Respivant. They have been extremely supportive, kind and are obviously dedicated to the effectiveness and success of this study. I am so happy to be able to share it with all of you!

    Charlene.

    Charlene Marshall replied 4 years, 5 months ago 2 Members · 6 Replies
  • 6 Replies
  • JillT

    Member
    November 19, 2019 at 3:34 pm

    Not sure if this is the right spot to post this, but I notice the Pulmonary Fibrosis Foundation Youtube channel have posted a webinar on the subject “Cough 101” that may be of interest to forum members:

    https://www.youtube.com/watch?v=lkSuRE0NIhc

  • Charlene Marshall

    Member
    November 19, 2019 at 5:14 pm

    Happy to have it posted here Jill, thanks for sharing! I look forward to watching this later this evening 🙂
    Charlene.

  • JillT

    Member
    November 20, 2019 at 12:34 am

    Thanks, Charlene. I’m currently watching it and it seems to be fairly comprehensive, so I’d definitely recommend to other forum members.

    I’m currently trying to obtain one of the IQoro devices (currently only licensed for EU countries) which are apparently helpful for reflux and other functions affected by vagal nerve tone. From some of the content of the video, it seems like improvements in vagal nerve tone could also be involved with some aspects of chronic cough. I’m really hoping the IQoro will help with my reflux which isn’t always very well controlled by medication, especially now that GP’s here are being actively discouraged from prescribing H2 inhibitors and I can only now take PPIs which have also been accumulating evidence of harm from longer term use. It’s a worry 🙁

  • Charlene Marshall

    Member
    November 23, 2019 at 2:14 pm

    Hi Jill,

    I also took a peak at the video link you shared and thought it was very informative. I hope others take some time to watch it as well. Thanks again for sharing!

    Let us know if you get your hands on one of the IQoro devices you mentioned, and if you find it effective. So many people suffer from acid reflux, it would be nice to discuss a potential or effective solution to that problem. Looking forward to hearing if you can get it in the US.
    Warm regards,
    Charlene.

  • JillT

    Member
    November 24, 2019 at 1:51 am

    My IQoro device just arrived actually 🙂

    I’m in Australia, so a very long way from the EU. Luckily, my sister has relatives by marriage who live in Norway, so her SIL managed to order the device and then forward it to me here in Western Australia. Going to start the training process tomorrow. Will let you know if it helps with my reflux/hiatal hernia.

  • Charlene Marshall

    Member
    November 26, 2019 at 10:10 am

    Hi Jill,

    Oh awesome – I’m glad it has been received. I’m curious to hear how it works out for you, do let me know if it is helpful with the reflux/hiatal hernia. I have my fingers crossed for you that it will!

    Kind regards,
    Charlene

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