This topic contains 8 replies, has 6 voices, and was last updated by  Charlene Marshall 1 month ago.

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  • #20300
     Bob Humphreys 
    Participant

    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 necessity rather than wanting to.

  • #20303
     Cynthia 
    Participant

    I started noticing a change in my taste buds before I started taking the Ofev last week, but now it seems worse. I was always an enthusiastic and adventurous eater, and now the only thing that appeals to me are chips and ice cream. I’m forcing myself to eat healthier food, but am not enjoying it.

    • #20306
       Charlene Marshall 
      Keymaster

      Hi Bob ( @bob-humphreys )

      Thanks for starting this topic thread, I suspect it is one that others on Esbriet can relate to. I’ve heard of this ‘metallic’ taste you describe actually, although I am on Ofev as opposed to Esbriet. Are you able to taste one ‘type’ of food more than another, ie. sweet vs savory? I truly am just curious as I can’t unfortunately relate to this post but I’m thinking others can. I’m glad Cynthia replied to you 🙂

      Can anyone else relate to this?

      Charlene.

    • #20338
       Bob Humphreys 
      Participant

      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 carmel popcorn is fine and pretzels. Potato chips run into the greasy side and for some reason greasy things aren’t very appealing anymore. Almost makes me want to gag. I know from friends who have had chemo treatments that they lose their appetite and have to find foods that they like to eat. So I’ve been researching that and found that most citrus fruits are fine and fruits in particular, I’m good with baked potatoes, sweet potatoes, and most vegetables. I have an issue with high carbs, they seem to make me feel like I’m drunk. I’ve told the doctor about that and he suggested eating small frequent meals which we were already doing. I’m eating oatmeal mainly for breakfast now as eggs are a new issue. Use to eat them frequently but now I’ve lost the taste for them along with bacon (greasy) even when fried in the oven. Occasionally eat cold cereal OK, cheerios, etc. Try to stick with the oatmeal as it supposed to help you gain weight. Drinking smoothies we’re making on our own to gain weight, with bananas, strawberries, chocolate protein powder, peanut butter, etc. I’ve found a few I can handle and mix them up. Had a chicken burger for supper with potato tots and corn on the cob. Had chicken soup yesterday that went down OK. It’s kind of trail and error right now. But I can tell you as I’m sitting here and breathing in and out I have that metallic smell going on. I thought maybe drinking water might dilute the med’s but that doesn’t seem to work either. Just weird stuff. I’ll try to update as I find new things I can tolerate or new issues going on.

      • #20347
         Charlene Marshall 
        Keymaster

        Hi @bob-humphreys,

        Thank you for writing and sharing a bit more about what you can/cannot tolerate. The trial and error phase is all we sometimes have to figure out how to manage this disease, isn’t it? Sure can be tiring but goodluck in the process of determining what works for you and makes you feel okay when eating it. I know @mark-koziol ate a lot of smaller meals (5-6) per day as opposed to big meals, this was in an effort to get on the transplant list. Hopefully this works a bit for you and you can determine what types of food (sweet, savoury, fruit, etc) make you feel the best afterwards. It sounds like you’re doing the right thing – which is continuing to eat, despite not feeling like it – as this is what gives our body the energy it needs to make it through the day. Keep up all your efforts, they’re quite admirable and I am wishing you all the best!

        Keep in touch.
        Charlene.

  • #20316
     Robert Obrien 
    Participant

    I don’t have or have noticed a metallic taste but I have had a loss of appetite (<40 lbs.).  It’s the nature of the beast.

  • #20337
     Doug Batten 
    Participant

    I have been on Esbriet for about a year. I don’t have a metallic taste or loss of appetite. Some foods seem to have lost their flavor. I’m still good with chips and ice cream as @Cynthia mentioned. Also spicy foods seem to have more flavor.

  • #20339
     Michael Panagiotopoulos 
    Participant

    Same here. General loss of appetite, and gourmet dishes don’t seem tempting enough.  In the space of one year I lost about 12kg.
    Now I go for smaller portions to avoid excessively burdening or upsetting my stomach. Generally all flavours taste the same as they used to, except my old favourite spicy sauces which have lost appeal and were moved to the avoid category . Instead, I go for more fruit and salads due to their juices and eat less meat… All this before I started Esbriet which then made things more difficult.

  • #20346
     Charlene Marshall 
    Keymaster

    Thank you all ( @mikepapa, @doug-batten, @bobo) thanks for sharing your experiences since I replied to Bob but didn’t have much to contribute or say. Grateful for everyone’s kindness in telling their story and sharing their experiences in this group.

     

    Kind regards,
    Charlene.

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