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  • Hello Jane

    I read that Peppermint Oil helps with nausea, and I found gum at Whole Foods w/ it.  Ginger tea, Chamomile tea, and sipping on ginger ale can help.  When my 1st wave of strong nausea hit me, I chewed that gum and drank ginger ale and it went away fairly quickly, thankfully!  There’s anti-nausea meds your doctor could set you up with…[Read more]

  • I just wanted to share about my side effects after only being on OFEV for just 3 weeks. I had a few of the typical expected things occur, my 1st dose had me momentarily feeling prickling tingles on both arms in the same spot by my elbows, but that passed by nearly as quickly as it occurred.

    The shocking, but rare thing come to find out, was going…[Read more]

  • Yvonne posted a new activity comment 3 months, 3 weeks ago

    Thank you very much Bill. I’ve not been on this site for quite awhile and just now saw your message, and it reminded me that I can do everything I can to fight this disease BUT, ultimately God is control of everything, he’s not forsaken me, and He is aware of everything I’m facing!

    After just 3 weeks on OFEV, it caused Hypothyroidism for me an…[Read more]

  • Yvonne posted a new activity comment 4 months, 3 weeks ago

    Hello Donna
    My pulmonologist wanted to do a biopsy, but my husband suggested waiting on numerous testing results to come back & the genetic testing came back conclusive for the cause of my ILD, therefore a biopsy or bronchoscopy was not needed. Just a thought.

  • Hi Charlene

    Yes, I am a part of a patient registry by way of the University of California Davis Medical Center because I signed up to be a part of their research.  I figured if by doing so that I could help in any way, it was a good idea.

    My genetic testing results came back that my ILD is hereditary and so I’m being put on OFEV.  No one has eve…[Read more]

  • Yvonne replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 5 months, 2 weeks ago

    I’m new to this site and have info regarding the topic of OpenDoors patient support program that my pulmonary doctor had me sign up for.  Maybe this will help someone.  My best to us all who are struggling with this terribly unfortunate medical condition.  Keep up the good fight!
    https://www.ofev.com/support/open-doors

  • Yvonne posted an update 5 months, 2 weeks ago

    @bill-mckee Hello Bill
    I was just diagnosed with genetic tests confirming the reason behind my Pulmonary Fibrosis. I chose OFEV over Esbriet due to having 2 pills a day to survive through overt having 9 pills to take. AND, the sun complications would be bad for me since I travel to Mexico.

    How are you doing, still handling the meds pretty…[Read more]

    • HEllo Yvonne: I began taking OFEV in Jan. 2018. I quickly learned that you don’t take it without eating!! While it’s not foolproof, I quickly correlated cramping and nausea with carelessly taking the medication without food!

      No hair loss.

      Progression has been “slow”, but steady now. Three years after diagnosis, it’s clear that I am less…[Read more]

      • Thank you very much Bill. I’ve not been on this site for quite awhile and just now saw your message, and it reminded me that I can do everything I can to fight this disease BUT, ultimately God is control of everything, he’s not forsaken me, and He is aware of everything I’m facing!

        After just 3 weeks on OFEV, it caused Hypothyroidism for me an…[Read more]

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