• Bob Humphreys replied to the topic Loss of taste in the forum Esbriet (Pirfenidone) 1 month ago

    Charlene,

    I do like Ice Cream and some snacks. But somethings I used to eat daily don’t appeal anymore. I used to eat popcorn almost every night but not the microwave bags have a greasy taste to me that I think the medication is causing. Air popped doesn’t seem so bad but I still don’t have the appeal for it as much as I use to. I have found…[Read more]

  • Has anyone taking Esbriet experience a strange metallic like taste from extended usage? Have you lost your taste buds? I’ve experienced both and have lost about 25 lbs since I started taking Esbriet. I’m still eating but nothing really tastes very good. Foods that I’ve always loved just don’t attract anymore. I know I need to eat so I eat out of…[Read more]

  • Mark,

    Not sure about immaculate shape. I have my moments, I just have to keep pushing on. There are times when my breathing gets spooky enough that I think I need to go to the ER. Just try to calm myself down and work through it. Keep looking for things that might make me better. That’s one of the reasons for joining this forum to see if I could…[Read more]

  • Just back from the gym and two workouts. Did 1.5 miles in 33 minutes in the first set then did some muscle toning with weights to try and stay toned, it all works together. Then back on the treadmill for another 1.5 miles in 30 minutes with some more resistance weights. I’ve never had to be on oxygen and my readings are always high when checked. I…[Read more]

  • Bob Humphreys posted a new activity comment 1 month, 1 week ago

    Not sure yet. Lung doctor said we’d be doing a CT in the next month or so to compare to the last one to see if the scarring has slowed down any. Esbriet leaves a funny taste in my mouth and affects my smell. Smell and taste is like the smell from plastic that’s not microwave safe. Not sure how it reacts with others.

    • Hello Bob, that is too bad about the Esbriet affecting your taste buds. I was on OFEV pre transplant and fortunately I didn’t encounter any harsh side effects.

  • Mark, I’ve been on the Esbriet for about 15 months. Was 158 when I started and now down to 132. Have added smoothies into my daily diet to try and add weight. Working on it, both doctors know. Always a work in progress.

    • How are you doing with the Esbriet? It’s weird how this disease works. I needed to lose 80 pounds before I could get on the transplant list. I wish I could of given you some of my excess weight.

      • Not sure yet. Lung doctor said we’d be doing a CT in the next month or so to compare to the last one to see if the scarring has slowed down any. Esbriet leaves a funny taste in my mouth and affects my smell. Smell and taste is like the smell from plastic that’s not microwave safe. Not sure how it reacts with others.

        • Hello Bob, that is too bad about the Esbriet affecting your taste buds. I was on OFEV pre transplant and fortunately I didn’t encounter any harsh side effects.

  • Long time runner that first discovered a problem with my breathing because I was a runner. I had been shut down from exercise after 4 eye surgeries in 2008. When I was cleared to start again during my first run I labored to breath. Thought it was being shut down for so long. Not long after I had an episode at night where I couldn’t breath and went…[Read more]

  • Bob Humphreys became a registered member 1 month, 2 weeks ago

  • Bob Humphreys‘s profile was updated 1 month, 2 weeks ago

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