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  • Richard Martin posted an update 2 years ago

    Charlene
    Do you or any of your readers own a personal home spirometry machine to determine FVC for IPF patients.. I am interested in knowing if they are considered to be of value to the user? Thanks and again a big thanks for all the research and writing that you do.

  • Charlene
    In response to suggested reading on Pf, the five books you listed, it appears that the majority are written for the medical, clinical or scientific practitioner.
    Yes there may be some information valuable to the patient but in my opinion more valuable to the physician, etc.

  • In response to your question, the rash etc. had no connection with heart or cardiovascular areas as far as we know. Doctors all believe rash was my extreme sensitivity to Esbriet and sun. However, do the doctors really know?? I am not sure.

    • Hi @richard-martin, thanks so much for getting back to me and following up with this. Sorry again to hear about the rash, that sounds terrible! I agree with your rhetorical question about sometimes, do doctors really know? Sadly, as a young adult living with IPF (30 years old) I often feel like I am educating them by quoting/referencing literature…[Read more]

  • Charlene
    A few words about Esbriet. Started it April 2018 and discontinued June 2018 due to severe rash (sunburn) where my entire body peeled. A few other side effects but nothing severe. Considered Opev but since i have atrial fibrillation and take a blood thinner I was advised not to start Opev as it does have a small history of not…[Read more]

    • Hi @richard-martin,

      Thanks so much for reaching out and sharing a bit about your experience with Esbriet – so sorry to hear about your rash/sunburn. That must have been terribly uncomfortable for you! Did they say that the cause of this unpleasant side effect was due to heart troubles? I know the OFEV does have a small chance of not working well…[Read more]

  • Richard Martin's profile was updated 2 years, 9 months ago

  • Richard Martin became a registered member 2 years, 9 months ago

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