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    • #13443

      Sorry I’ve been M.I.A (“missing in action”) the last few days forum members! I started a new medication on Sunday and it has been wrecking a bit of havoc with my stomach, severely suppressing my appetite. My doctor is telling me that eating will actually help reduce the side effects, but there is nothing I want or am interested in eating since starting this medication. I am eating because I know my body needs it, but apparently not enough according to my healthcare professionals.

      Not only is this medication impacting my stomach and my appetite, it is also exhausting me. I have napped both Monday and Tuesday throughout the day, and usually I don’t need to do this unless I have an overly full schedule. As a result of overall fatigue, I am also not really interested in putting energy into cooking meals which doesn’t help with the having to eat.

      When I don’t feel like eating solid foods, I often turn to protein shakes and mix those up but I am not even feeling like that right now. If anything, my preference is a protein bar (with only 1-2 grams of sugar) because it is easy to just grab and go. However, the nutrients in a protein bar aren’t sufficient to be eating these regularly. As a result, I thought I’d turn to you all and ask:

      When adjusting to a new medication, or when you’re feeling unwell and are struggling to eat but know you should be, do you have a preferred meal or type of food you turn to?

      How do you prepare food, or eat nutritious meals when you’re also lagging in energy or feel fatigued due to the new medication(s)? 

    • #13451
      Laura Denne
      Participant

      I would also be interested in ANY suggestions people may have to offer. Since starting Ofev, my husband has had no appetite and started to lose weight. It is hard to get enough calories into the poor man!

      That being said, his “go to” foods are smoothies and soups…things that don’t require much effort to get down. I make the snmoothies with yogurt, protein powder, and fresh fruit. He loves homemade potato soup and Lipton Chicken Noodle soup, so those are always on hand (or in the freezer). Hamburger has replaced steak, and eating “in” is what we do now rather than going out and ordering much more food than he could ever eat.

      Exercise is almost a thing of the past, and we are thinking that the upcoming “6-minute walk test” required by the insurance company to renew the prescription for bottled oxygen, is going to be a big joke. He can walk about 2 minutes without having to sit and “catch his breath”…and that is WITH oxygen! Sometimes I wonder who makes up the rules. Certainly nobody who has ever experienced IPF.

      Adjustments. Hard to manage sometimes. I wouodreally like to hear how others are dealing with the appetite issue.

    • #13479

      Hi Laura,

      Thank you so much for getting in touch and for sharing a bit of your husband’s experience with us, although I wish him better days with his appetite. It certainly is frustrating to know you have to eat to be strong enough to fight this illness, but having no interest in food to do so is tough. I find it interesting how this has been your husbands experience with OFEV, as I didn’t find my appetite changed with starting this medication but instead with a different one. I don’t feel ill really (a bit of an off stomach), just nothing seems to appeal to me in terms of food…. its tough!

      I also prefer to cook at home as opposed to going out, and prefer easier meals like smoothies and protein shakes. Although these are good for you, they aren’t enough nutrition to be take on the regular according to my dietician. We still need to many nutrients for our bodies that can’t be found in a power supplement. This was hard to hear for me, since my preference is to make them due to how easy they are. Glad he still enjoys soups too, this is also a wonderful option!

      I couldn’t agree more about the 6 -minute walk tests! Obviously the people who have determined this is helpful have never experienced IPF, as I can’t do it in full either and definitely not without oxygen. I try to think of it as a test that I’m set up to fail, so I try to fail as “little” as I can. I have a hard time with this test too, and wish your husband best of luck with it!

      I hope others respond to the appetite issue too, a lot of people did on our Facebook post about it using the Pulmonary Fibrosis News Facebook page. Although, I think a lot of people just confirmed that they share this experience too. I’ll take a look at the post though and collate the responses here about what people do to increase their appetite, if this would be helpful for you and your husband? I can send those responses directly to you, let me know 🙂

      Charlene.

    • #13485
      Chuck Harrison
      Participant

      I find , we’ll let me start by saying hello , I’m chuck
      When first told of my ipf I was 216 lbs , I’m now 170 . On. Top of everything else I have heart disease ( open heart 2012 , also diabetic since 1999 .
      I find gloucerna goes down well , it gives me what I need and my wife ( Rose ) makes sure I drink it , she’s a good care giver . But yes gloucerna helps a lot .

    • #13488

      Hi Chuck,

      Thank you for joining our PF forums and for contributing your experience(s) to this thread. Welcome!

      I’ve never heard of Gloucerna, although I am just about to go look it up. If your wife makes sure you drink it (I’m so glad she is such a good caregiver for you) then I assume it would be a supplement / meal replacement drink of some kind? I’ll check it out, and glad to now be aware of this resource. Sorry to hear of both your IPF and heart disease, this must be tough to deal with. Sending you best wishes only!

      Kind regards,
      Charlene

    • #13516
      Roger Coles
      Participant

      I was diagnosed with IPF some 2 years ago and was lucky enough to get on a trial for  Nintedanib (Ofev) here in Australia, I think I have adapted well to the twice daily intake of capsules, but have certainly noticed that my appetite is not anything like it used to be, and over the past few months have lost around 6lbs in weight. Not that I couldn’t afford to lose it, but I marvel at the amount of food my make friends can at when I go to a restaurant compared to what I need. My other problem is am a diabetic of some 35 years and till  recently have managed my blood sugars very well maintaining a very good number. But with the desire for less food I have suddenly started to have mild hypo’s – which I can feel coming on – which  I believe are being caused by the amount of food I am eating. Naturally I have adjusted the amount of  insulin taken, but it has become a juggling act which for me is something that I must be aware of

      • #13591

        Hi Roger,

        Thanks for getting in touch, it is wonderful to hear from you as always!

        I am also on OFEV and appreciate hearing from you, as not many folks on our forums are on this drug. I think the majority of people are on Esbriet. My appetite has changed significantly as well and I find I crave things I never used to, or I don’t have any interest in eating solid food at all. It is quite strange and even my friends and family members have commented on it. I resort mostly to soft foods and smoothies now, and sometimes I don’t even have the energy to muster up those things, which is quite frustrating as a smoothie takes little effort.

        Sorry to hear about the balancing act you’re having to do with the blood sugars, that must be tough. I hope your appetite straightens out a bit, and you can continue to manage everything well. Best wishes to you Roger!

        Cheers,
        Charlene.

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