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  • Yvonne posted an update 6 months, 1 week 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 well? Your info gave me hope as far as tolerating the meds. Have you experienced any hair loss?

    I hope your journey through this disease is going as well as can be expected. Take care.

    • Bill replied 6 months ago

      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 able to climb stairs etc without some degree of breathlessness and fatigue.. but I’m not complaining.

      It’s difficult to know if the medication “slows progression”. After all, how could that be determined with specificity?

      For me, the condition caused me to re-examine my Christian walk.. and reaffirmed the Hope I have in Christ! While medications are fine, in the long term, there are more important matters to consider. Hope you find hope in this: https://www.patheos.com/blogs/christiancrier/2015/10/11/top-7-bible-verses-about-rising-above-our-circumstance/

      • 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 and the endocrinologist said that could be reversed possibly if I went off the drug, or it might not.

        In addition, my liver enzymes are out of the range. I understand that the results of my lab work on 3/23 may indicate the need to discontinue the OFEV.

        I have tolerated the OFEV fairly well, little to no issues but just like the disease, things can appear well on the outside while working the opposite on the inside.

        Strength, hope, and faith are the gifts Christ brings me each and everyday as I face this disease. Thank you for reaching out to me!

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