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    • #12658

      On two separate occasions I have heard from other patients with pulmonary fibrosis (PF) that eating has impacted their ability to breathe. More specifically, I’ve heard from patients that feeling “full” or satiated after a large meal causes increased shortness of breath. Has this ever been your experience? 

      I first heard about this from a family friend at my cottage, who I actually just discovered has PF as well. We were talking about eating with our disease in general, and how sometimes, trying to eat, breathe and talk (not all together of course, but simply carrying on conversation with others during a social meal) can be difficult for patients with PF. Then she asked me if larger meals, where I end up feeling satiated caused me to experience increased shortness of breath. I told her that it hadn’t, and wondered if this could possibly be a side effect? Turns out, I read in a post on social media recently that other patients have experienced this as well.

      Is this common for you, or something you are aware of as a patient living with PF? It wasn’t for me, but I’d be curious to hear from you. I suppose this could also contribute to some patients’ struggle with GERD and acid reflux as well.

      Generally speaking, has your disease impacted your appetite and if so, how? As an example, has your appetite increased or decreased, or do you find your food preferences have changed since your diagnosis? 

    • #12704
      paula
      Participant

      The fibrosis IMHO has not changed my appetite. BUT the Esbriet did. More specifically it changed what I like to eat.
      I used to LOVE bacon. I would eat a pound easily if put in front of me. The crispier the better. Now…… eating one slice is a challenge. I no longer like eating cheese burgers. I love cheese but can no longer tolerate it on hamburgers. I am also no longer a big fan of pizza, and when I do eat it, which on a good day may be two slices, I can no longer have any type of meat on it.

    • #12721

      Hi Paula,

      Thank you so much for getting in touch, it is great to hear from you! How are you? Did the rash/reaction subside for you?

      I am so shocked to see how much conversation this topic (on appetite and PF) is generating on our social media platforms. I am trying to drive some of the comments and traffic from our Facebook page onto the forums, as there are so many others’ who found that their appetite changed either due to medications, or the disease itself (ie. a full stomach putting pressure on the lungs, reducing their ability to breathe). If more folks don’t join and share their experience, as I reached out to them about the forums on Facebook, I might anonymously compile their responses for the forum. It is so fascinating and I had no idea how many people this impacted, and wish it didn’t!

      Hmm, it sounds like you’ve had a bit of a food aversion to meat and or greasy type foods which can certainly be comforting when we aren’t feeling well, albeit bad for you. Can you eat other types of meat, such as a steak or chicken breast?

      Looking forward to hearing back from you and thanks again for sharing.

      Warm regards,
      Charlene.

    • #12730
      Rose Miller
      Participant

      I am glad we are on this topic.  I am into my 3rd year with IPF and am on OFEV.  Just recently I’ve been experiencing a lessened appetite and taste differences.  Also, if I eat too much, it does affect my breathing, probably to the diaphram pressing up againt the lungs.  Yesterday, I went to a luncheon and ate a little too much, I noticed a rise in heart rate and some shortness of breath.  This lasted into dinnertime  which concerned me because I needed to eat in order to take my OFEV which requires a substantial amount for me.  I was finally able to eat around 7:30 in order to take my pill.  I think I will just eat very small meals (snacks) throughout the day, avoiding a larger lunch.  My pulmo doc told me in the very beginning that I would lose weight, but I have not as of yet after 3 years.  I’m thankful that I’m still able to tolerate the OFEV, and that it’s only 2 pills per day.  Would love to hear from others.

      Rose

      • #12754

        Hi Rose,

        Thanks so much for getting in touch and sharing your experience with us regarding appetite changes and PF. I am also on OFEV for just over a year, and I’ve definitely heard from others, like yourself that certain food aversions or appetite changes take place seemingly at random with this disease and medication. I really had no idea about the physiological impact of having too much to eat on the lungs, but your description of it (along with others) makes sense to me now. So sorry to hear of your luncheon experience and the increased heart rate and shortness of breath. I can imagine that was worrisome, especially since it was something that happened unintentionally. Does it seem to happen at certain meal times (ie. during breakfast or dinner) or any time you eat a larger meal? Snacking is good throughout the day too as it maintains your metabolism at a consistent level. Someone once told me you should eat 6-8 small meals/snacks per day… might help with the breathing?

        I didn’t know about the weight loss piece either, until a friend of mine who is a Clinical Nurse Specialist told me about the amount of calories patients with IPF burn just trying to breathe. This makes sense for me, as my appetite hasn’t changed much and I have experienced some weight loss…. not a lot though. I am also interested in continuing to hear from others on this topic. Glad OFEV is still tolerable for you, and wishing you nothing but the very best Rose.

        Kind regards,
        Charlene.

        • #20054
          Patricia Williams
          Participant

          Hi, I am new to this forum. I know I have had IPF for over a year, possibly two years. I was officially diagnosed after a lung biopsy at University of Louisville in Oct 2018. My Dr said my condition is mild to moderate. I am on Ovef  150 but have had to go to one pill a day to give my body a rest. I am doing my best to take two so I can get the full value of the medicine. I am 76 years old, married with four children, seven grand-children and three great-grandchildren. I have received so much help already by reading all of the comments. I hope I can be of some comfort to someone along the way. Thank-you for listening.

        • #20061

          Hi Patricia,

          Thanks for writing to us, and welcome to the PF forums! While I wish it wasn’t this cruel disease that brought us all together; I am so thankful for the support and compassion found in these forums. I am glad to hear you’ve found the comments helpful, and no doubt, your sharing will be of benefit to others too! It takes a lot of courage and vulnerability to share our story, but I am so thankful for those who do because they provide great comfort to others. Thank you for doing that.

          Kindest regards,
          Charlene.

        • #20055
          Patricia Williams
          Participant

          Hi Rose, my appetite had dramatically been compromised. I have lost 21 pounds in one year. I am on OFEV but am really dealing with the diarrhea. My Dr has me on one pill for a short time and then try two again soon. I am learning what foods send me running, 😂, and I too am trying smaller meals.

        • #20058
          paula
          Participant

          @Patricia Williams. Last year I dealt with the diarrhea for 11 weeks straight. Horrible (did not lose one ounce stupid fat fairy). I could not get under control. So my doctor told me to go off of it for a few months (at the time I was on 100 2 times a day) to let my body reset.

          This past Feb I restarted the 100 2 times a day and have learned an interesting method to keep the diarrhea in check. This works for me, and it might help you.

          The moment I see the first sign of diarrhea, I immediately take 2 of the pills that were sent with my initial prescription (was told when I no longer have any I can simply buy imodium ad. He said that 2 of those are equal to one of the pills sent with the initial prescription. So in my case it means I would take 4 of them at the first signs of diarrhea). In the past, I would kind of do a wait and see if in fact I was starting with the diarrhea, then take the meds.  This was probably why it got so out of control.  Now with my new way of dealing with it, any issues I have with the medication is really very minor.

          I have been bumped up to the 150 2 times a day because the IPF is progressing to the point that my hands and feet turn blue at times. The increase in meds is being done to try and stabilize the progression while I am in the process of trying to get on the transplant list. Yesterday I needed to use my ProAir because it was getting difficult to catch my breath. Usually doing the inhaler works right away. Not so yesterday. Took over an hour.

          Welcome to our family here. You will find everyone is quite helpful and no question is ever dismissed. Whatever is going on, we are here to listen, offer advice, and be a sounding board when you need one. No matter how big your family is, or how much they try to understand what is going on, We understand what your going through. Might be some slight differences but we get it. Welcome.

          • This reply was modified 1 year, 3 months ago by paula.
    • #12732
      paula
      Participant

      Hi Charlene

      My aversions have no consistent pattern. I love cheese and still eat it, but no longer like it on hamburgers. Its not that I do not like bacon, I just have no desire to eat it.
      I am totally in love with buffalo wings. The problem I have with them is I am still dealing with chapped/split bottom lip from the reaction to the Esbriet.

      The rash has finally gone away after the last outbreak 5/11. I have not taken Esbriet since that date and my doctor is putting in the paperwork for the other drug. OFEV. Fingers crossed that the insurance company will cover it, and I do not have an allergic reaction to that.

      I did catch the pharmacy charging my insurance company and grant money for a shipment that was not sent. Called the pharmacy, read them the riot act, they reversed the charge. Both the insurance company and grant money people thanked me for catching that as they both admitted that they would have never known that I did not get the medication.

      But back to the food thing. While I get what I call the hungry horrors from time to time, by and large its almost as if I simple am not interested in eating. I do eat, but its limited amounts. Not sure why it is that way. Weight is still coming off slowly, which IMHO is good. Was planting the other day and my pants kept slipping and I had to keep pulling them up. Love that.

      • #12756

        Hi Paula,

        It’s great to hear from you, thanks for getting back to me!

        So interesting to learn about certain food aversions that you have, and that others seem to have as well. Originally I know some people thought that it was maybe the medications causing this but I’m not so sure. Do you think it is your Esbriet use that might change your food preferences? Also very interesting that they don’t seem to have any pattern, or that you still like some things (ie. cheese) but not with other foods anymore. Do you have you have any gastric responses to certain foods? Sorry if an embarrassing question! The reason I ask is because I really struggle with anything spicy now, it actually gives me major acid reflux or heartburn.

        Regarding the response to Esbriet, do you think this will go away for you soon? I hope so! That must be so uncomfortable to still be experiencing the split lips. I will definitely keep my fingers crossed that you don’t have any reaction to the OFEV. Starting it was pretty seamless for me, but I know everyone has their own experiences. Goodluck!

        I cannot believe the pharmacy and charing you for a medication you didn’t get. That is unbelievable and I’m glad you noticed, and called them on it. That concept is so foreign to me, as Canadian pharmacies and the cost of medications are really different. So glad you found that out and that they reversed the charge.

        Hope you’re doing well otherwise, and glad you’re pleased with a bit of weight loss on your end. It always feels nice doesn’t it? Enjoy your weekend and as always, thanks for getting in touch!

        Kindest regards,
        Charlene.

      • #20060
        Patricia Williams
        Participant

        Thank you for your response Paula. I will definitely try the pills right away.  I do take them but am always hoping it is a one time thing and I won’t have any more problems so I  wait, but not any more. 😍

        I certainly hope you can get a transplant soon, our neighbor had one for PF and he is doing great. Good luck to you.

    • #12733
      paula
      Participant

      Hi Rose,

      I am at the 2 1/2 year mark of dealing with IPF. I started on Esbriet just after Christmas. Did not want to start earlier because I had read about the side affects and I wanted to enjoy my Christmas dinner. Ended up I had no negative side effects initially. I have lost over 20 lbs which is good. Evidently if I needed a transplant now, they would not consider me because they said I weighed too much. Stupid BMI.

      As mentioned above I have stopped eating many things that I liked, because it appears that I have lost interest with certain combinations like cheese burgers. I love cheese, eat cheese, as I like hamburgers but I can no longer tolerate the two together. They do not make me ill, I just do not want it.

      I developed an allergy to the Esbriet and the doc is now getting the paperwork together to put me on OFEV. I simply love the amount of pills you have to take with that. I hope I get that same dosage. On the Esbriet I was taking 9 pills a day.

    • #12737
      Cooper P Abrams III
      Participant

      My appetite has not changed, nor have I lost weight.  Diagnosed with IPF in February.  It took three and half months to get thet dianoses.   I am not on ifp medication, and coming off predizone completely in two more weeks (5mg).  I was on 40mg initially staring in October.

      I am on oygen part of the time, mostly when I am active and at night.

      I cannot understand why I feel shortness of breath when my oxygen is at 93 to 97.  Sometimes even when I am using oxygen.

      Initially had blood clot in right lung and a bacterial infection, plus interstical lung disease. I am feeling better now and steroid withdrawal symptoms are lessening.  I am fighting this.

      • #12757

        Hi Cooper,

        Thanks for getting in touch with us and sharing your experience on this topic. Seems as though it is a popular one that folks have experienced, so I’m grateful for the time you took to respond so thoroughly to this thread.
        That all said, I’m sorry to hear of your IPF diagnosis in February. It sounds like you were symptomatic for awhile before that, if you’ve been on Prednisone since October? How do you find you’re tolerating tapering off of this medication?

        I am similar to you in my oxygen use, as I have it during times of exertion, extreme heat/cold and when I am sleeping. Your shortness of breath question is a good one, as sometimes our symptoms don’t necessarily reflect what we read our oxygen levels to be. Are you short of breath on the regular would you say or is it during specific times, ie. changing positions (standing/sitting)?

        So glad you continue to fight this – we’re here fighting with you! Is the infection in your lungs under control now?

        Wishing you nothing but the best Cooper, and thanks again for getting in touch.
        Kind regards,
        Charlene.

    • #12739
      Maureen Lake
      Participant

      Yep!  I nolonger tolerate greasy foods as well.  I definitely eat smaller meals.  Chocolates bother me (but I eat them anyway)  I find My O2 drops, so if I am out I do use my O2 at 1-2 L  helps. About 30 min after eating I tend to get congested & cough up mucus, very embarrassing , wearing O2 seems to limit this.

      • #12758

        Hi Maureen,

        Sorry to hear of this experience for you – it must be frustrating to know that the coughing and congestion is coming after your meals. Does this always happen for you? Are there certain foods that might lessen it a bit? Glad wearing your oxygen seems to help you! I would tend to agree with you, in the sense that, if chocolate bothered me, I would still eat a bit of it too! 🙂

        Take care,
        Charlene.

    • #12743
      Sheila Blanchard
      Participant

      Yes I eat less and have lost almost 40pounds Food just has no appeal. I am 79 years old and was diagnosed two years ago.I retired at 75 to look after my husband who died of Cancer two years ago my daughter had me give up my apt hoping it would be easier for me but as I had to rehome my cat it hasn’t  It was too much stress. I am not on oxygen yet but am having breathing problems my oxygen levels most times are in the 87 88 89 -to sometimes 91 92. I had a sleep apnea test done but as yet have no results. I go to my pulmonary respiratory Dr. OnJune 14 and hope to get some answers then.I don’t sleep well. Have bad Acid Reflux and always feel Very tired.At first it seemed to be progressing slowly I was put on OFEV but had some ill affects so was taken off. Am now not taking any Meds. for it. And talk about brain fog.not good.I also have type 2 Diabetes and some low levels of Kidney failureThank you Charlene for letting me talk about this as I think no one really understands. Thank God for you and this forum it does help to know that others with IPF go through Thank again Sheila

       

      • #12759

        Hi Sheila,

        Thanks for getting in touch with us, although I am so sorry to hear of your experiences with stress and loss of appetite. Losing your husband must have been terrible, and re-homing your furbabies must have been tough too. I certainly wish easier days ahead for you my friend.

        Does your doctor know that your oxygen levels are in the 80s? This can be dangerous to your other organs, even if you aren’t experiencing shortness of breath. If he/she doesn’t, be sure to track it so they know that your levels drop that low. I think the general rule is if your oxygen drops to 89 or lower, you should be using supplemental oxygen but don’t quote me on that necessarily. I really hope your doctor gives you some answers, and that the sleep test reveals some things you can do to help you feel a bit better.

        We’re here for you Sheila, I know it is so hard dealing with this disease when others truly cannot understand what you’re going through. What I think is so special about our forums is that people here really do “get it”, although I certainly wish for all of us that we didn’t have PF/IPF. Sending you much love and prayers Sheila – hang in there!

        Warm regards,
        Charlene.

    • #12755
      paula
      Participant

      Sheila, I would be totally lost if I had to rehome my cats. When I saw the pulmonologist in Boston (to get in the system for when the time comes for a transplant) I brought up that I had cats. He asked if they were indoor or outdoor. I said they were all indoor. Since they are indoor I do not have to rehome them. good thing because that would have been a deal breaker for me. So when the time come (and if I lose at least another 20 lbs depending on whose chart says what my weight should be. (can you believe one said I should be at 125????? OMG I am 62 5’3. I have not seen that weight in over 20 years. Another chart said for my age and height I need to be between 145 – 155. I can deal with that) my husband will have to do the litter boxes.

      I am not on O2 either. and I am certainly not in any rush.

      Sheila you are among friends. We all get what your talking about and we will always be here to listen to you when you need to talk.

      • #12760

        Very well said Paula – we’re all here for one another, including you Sheila!

        Hugs,
        Charlene.

    • #12762
      paula
      Participant

      Hi Charlene
      Yes I have issues with my stomach. I have been taking 2 daily pills for the stomach issues, but now that I am off Esbriet I believe I can go back to only one a day.

      Many of my doctors think I am an enigma as I do not follow the normal course of action. My primary will listen to my lungs and say they sound great, and then I cough which is very junkie sounding. The doc just shakes his head. As to my stomach. Are you ready?

      I can eat spicy food and not have one issue with it. BUT give me a slice of wheat bread (I do not eat white bread) and my stomach will act up. Not real bad but bad enough. Told you I was a weird duck.

      The doctors office is working on getting a blood test for me that Boston wanted. Its a genetic test given 2 of my 1st degree cousins also had IPF.

      How have you been feeling lately? You always ask us, but never really say too much about how things are going with you.

      Have a very nice weekend.

      Paula

      • #12774

        Hi Paula,

        Thanks for getting back to me, and my apologies for the delay in responding! It was a busy weekend here, and a hot one so I wasn’t able to do too much. I was pretty reliant on my oxygen and rescue inhalers in such high humidity!

        Sorry to hear of your stomach troubles! Sometimes I get this as well and wonder if it is disease or medication-related. Especially with being on Esbriet, there is a high potential your stomach troubles are from that I guess, huh? It is so crazy though that you can tolerate spicy foods and not have any issues! Most people really struggle with that who don’t have any type of chronic illness or subsequent medications. Do you think the react to wheat bread has anything to do with gluten or celiac? My Mom has this and it can cause some pretty odd stomach issues. Curious to know if you’ve explore this at all?

        Keep me posted on how the blood test goes, if you wouldn’t mind. If they do end up determining a bit of a genetic link/component, will this change anything for you, or will other members of your family need to be told? I asked my brothers if they wanted to go through this too but neither of them did. I’m not sure how I would feel if the situation were reversed, but I think I’d want to know if I might be genetically pre-disposed to IPF. I guess it is their choice though!

        For the record, I don’t think you’re an odd duck…. I think you are quite lovely 🙂

        I have been feeling okay, with the exception of the heat. Not only does it make my breathing more difficult, I also am so tired in the heat. Just as of this morning I have a bit of pain in the front of my chest, kind of middle to lower sternum area and I can’t get a deep breath in without a cough (dry though, nothing productive) so that has me a bit worried. I’m going to try and ‘lay low’ for a few days in hopes it doesn’t turn into anything but it definitely doesn’t feel right. Thank you so much for asking!

        How was your weekend?

        Take care,
        Charlene.

    • #12769
      Colleen Puniard
      Participant

      Yes, definitely. I used to really enjoy food, lots of food. Now for the first time in my life I’m indifferent to it.  Often no appetite at all.  Things I used to love taste different too. Beef sausages now taste chalky. Many things taste bitter. Don’t know if it’s the IPF or the Ofev. Certainly worse since I started that medication.  I’ve lost quite a bit of weight.  Can’t eat until I’m full or I get reflux. Taking medication for that too. Maybe I’m not hungry because I’m full of pills!

      • #12775

        Hi Colleen,

        Thanks for connecting with us and sharing your thoughts on this topic thread! It seems so many people are impacting by this; meaning their PF has changed their appetite or increased their shortness of breath after eating. I had no idea it was so common, and sorry to hear that you’re experiencing it also.

        That is a good way to summarize or describe a lot of members’ responses… being ‘indifferent’ towards food now. Are there any types of food that seem to re-ignite your appetite at all: sweet? salty? carb-heavy? Comfort foods for me are like warm pasta dishes, and even though I know it isn’t good for you, it is something I often reach for when I’m struggling to eat on the regular. It unfortunately sounds like the culprit might be the OFEV 🙁 Seems unfair that a medication aimed at helping us with our disease, robs us of other joys like eating and certain foods. I hope things turn around a bit for you Colleen, and that you can start enjoying some preferred foods again.

        Take good care!
        Warm regards,
        Charlene

    • #12789
      paula
      Participant

      Morning Charlene

      I pulled away from white bread years ago. And long before my IPF diagnosis, bland stuff, bread/crackers will be the cause of my heartburn if the heartburn is flaring up. No one is really sure why. Just another mystery to the doctors.

      I too have been having issues as of late with SOB and tightness/pain in the chest. I asked about that once, well maybe twice lol, and was told it was because I was struggling to breath and was causing the chest muscles to hurt. Have to admit when I was told that the lungs themselves have no nerves in them. Who knew!!!

      But I think my increase in SOB and definitely more coughing is due more to being off the Esbriet. I put on a couple of pounds, hope they go away otherwise I might have to fear that the fat fairy has found me again. ‘

      Sorry to hear that the weather has bothered you to the point where you have to rely more on the oxygen and inhalers. I am so thankful that I have not had to have the O2 yet. When I say that to people, they look at me like “Why? If its going to help you breathe, why would you want to stay away from it?” As with many things, they just do not get that having to start using the O2 is yet another step backwards (my perception) in the fight with this disease. These people mean well, but as many of us know all to well, they just do not get it.

      Thankfully, my loved ones get it when I have to slow down, and and take a little longer to get out what I am trying to say.,

      Weekend here has been busy. We live on a very large pond, my husband and son put out the piers. This will be the last summer to do that as we sold the house and are in the process of buying a new home closer to where the kids live. Hope your weekend goes well.

      • #12792

        Hi Paula,

        Great to hear from you as always! Thanks for getting in back in touch and closing the loop to some of my questions. I am the queen of questions somedays LOL!

        Interesting re: the food choices that seem to cause heartburn for you, as opposed to even digestive issues. I know things like breads, carbs/crackers, etc can really cause stomach troubles but I didn’t know about heartburn! Are there still some foods that cause heartburn for you now, following your IPF diagnosis? I don’t seem to physically endure symptoms or side effects from food much (except lactose, I think I might be starting to develop a lactose intolerance) but what I struggle with now is food preferences. I don’t actually have a lot, and need to increase my appetite a bit more.

        I’d heard about the lungs not having any nerves in them as well, which seems bizzare based on my symptoms and discomfort. It must be the muscles surrounding the lungs as you say, which makes sense because my back and shoulders are sore from coughing too. I’m wheezy and a very tight chest with increased SOB. If it makes any sense, it almost feels like fluid is in my lungs. I have a follow up with respirology tomorrow thankfully to see if they spot anything immediately concerning.

        I can completely relate to you about other people’s comments about the oxygen. I agree that they are well-intended, but it is almost an “easier said than done” situation for them, because they aren’t the ones wearing it or receiving the stares and questions about it. Just this past weekend, I had a woman come up to me (I didn’t know her at all), point to my nose and say “why are you wearing that, are you a heavy smoker”? I tried not to let it upset me, but it did. Glad your loved ones get it, cherish them tight, they sound wonderful!

        Ahh your home and living space sounds beautiful. Hopefully you’re having as nice of weather (albeit hot) there as we are here… if so, it is perfect conditions to be on a pier near the pond! Enjoy 🙂

        Cheers,
        Charlene.

    • #19912
      Steve Gould
      Participant

      I just joined yesterday after finding you when doing a Google search for “Esbriet and bad taste in mouth”.

      I started taking Esbriet early in April, so I’ve been on it for a little over 2 months. I felt no adverse  effects during the first week. The second week, at 2 capsules 3x/day, I started to feel some fatigue and took a couple of afternoon naps. After going to full dosing during the third week, I started to feel really tired much of the time and after a couple of weeks like this my doctor backed me off to 3-2-3 each day. I found I had good days and bad days without any logical pattern. I left for a 3-week trip to Europe and was feeling remarkably good most days so went back to 3-3-3 after the first week and have stayed at this dosing. A few days I took an afternoon nap, but I only had one really bad day of fatigue.

      Fatigue was the only side-effect I had until about 2 weeks ago when I noticed a persistent somewhat unpleasant taste in my mouth. It is somewhat of a sweet taste, maybe metallic. Since then it has more an more affected the taste of pretty much everything I eat and drink – even plain water. It has gotten to the point where I don’t enjoy eating anything and am forcing myself to eat and drink anyway. I seem to do better with foods with a lot of seasoning so that flavor can mask the bad taste. Yesterday I tried using Crystal Lite in the water I drink and that helps.

      I haven’t seen any posts to this forum that describe the taste sensation I’m experiencing. Does anyone else have this side-effect of the Esbriet?

      • #19936

        Hi Steve,

        Thanks for joining the PF forums – welcome again! While I wish it wasn’t this cruel disease that brings us all together, the folks on this site are very welcoming and kind. Everyone is willing to share their experience, which I certainly appreciate. Glad to hear that, aside from fatigue, you seem to be managing the Esbriet well. I know the fatigue from the anti-fibrotics (even though I am on Ofev, not Esbriet) can be really tough to manage!

        I have unfortunately heard other members describe what you have regarding the “metallic taste” in your mouth. It has been discussed a bit in this forum, although I know this is a lot to read through: https://pulmonaryfibrosisnews.com/forums/forums/topic/best-way-to-take-esbriet/

        I hope this helps a bit, and so sorry you’re experiencing an unpleasant taste. That makes eating, which is already difficult enough on the anti-fibrotics, just that much harder. Has anyone else had this experience that they can share with Steve?

        Kind regards,
        Charlene.

    • #19957
      Lindas
      Participant

      Hi Charlene, Sorry about your current difficulties. Thanks for this forum I have learned so much. I was just searching​ humidity and PF yesterday. My symptoms match yours. Even staying in air conditioning and still have symptoms. Appetite problems have bothered me for awhile now. Spicy foods are not for me except occasionally. Been on Oxygen 24/7 since 2016. I am currently at 4 liters. Not on either of the meds. PF diagnosed in 2016. Was on oxygen for 6 months in 2014. I stopped it because I thought I was OK. Developed heart failure after chemo in 2011. Another cancer 2013 caused severe skin damage to skin inside and out. More than 1 Dr. told me I had a lot of.scarring in my  lungs. No mention of PF. Heart Dr. sent me to lung Dr. Food is not my friend. Shortness of breath is the culprit. I eat small portions and snack through the day. This works for me right now. Sorry this is so long. Thanks Charlene and all of you for your help.

    • #19976

      Hi @lindaserritel,

      Thanks so much for reading my columns and connecting with us regarding this topic on the forums. I so appreciate hearing from you, and all the other wonderful members of this online community – glad you hear you’ve learnt a lot from the support and information shared here. It makes it all worth it 🙂

      Sorry to hear you’re also dealing with the symptoms of the humidity, as I have been. Just the other day I said in my head, “oh right, this is what the humidity/hot weather does to my lungs” because suddenly it was feeling that returned, which I’d forgotten about since last summer.

      You sound so strong and brave Linda, sorry to hear about the things you’re facing as a result of the cancer and chemotherapy side effects. How awful! Yes, I do find eating smaller meals helps me too, as opposed to larger meals and I really enjoy snacking on smoothies. Can you have these if you don’t feel like eating? They’ve been my saviour!

      Take care Linda and feel free to write anytime. We’re always here for you!
      Charlene.

      • #20002
        paula
        Participant

        Charlene, I sent you an email this morning regarding Ray.

    • #19995
      Malcolm Mann
      Participant

      Hi all I’m on 2x 100mg Ofev and am handling it ok, (as opposed to how I tolerated 2 x 150mg a day) I have no idea what food s I can tolerate and vice versa, I seem to have random diarrhoea events, when ever. From an Epicurian foodie to my present self, how the mighty have fallen.

      It’s a work in progress but the portion size has definitely been reduced, by about half, my wife and I often share meal in a restaurant these days. I’m making up for it by small snacks.

      Humidity is no a problem here at the moment, we nearly had a frost this morning, not cold by Northern Hemisphere standards but chilly all the same.

      cheers

      Mal

       

      • #20000
        paula
        Participant

        Hi @ Malcolm Mann. My eating habits started changing when I was on Esbriet. I am right now on 100 mg OFEV 2 times a day going over to the 150 two times a day to try and stabilize the progression of the IPF while I am in the process of trying to get on the lung transplant list.

        More than changing my appetite, I find there are foods that I simply no longer care for. Such as cheese. Let me preface that by saying I LOVE cheese and like to have it at night with crackers but I simply detest it on hamburgers now. And then there is pizza. Used to love pizza. Not anymore. Some times I will look at it and say, “mmmmm that does look appealing” but I know I would be lucky to even like one tiny bite. Snacks I used to like, not any more.

        So in answer to your initial question, I do not think in my IPF itself changed the way I eat, for me, it was the medication.

        • This reply was modified 1 year, 3 months ago by paula.
    • #19998
      Marianne
      Participant

      Hi Everyone –

      I am trying to eat smaller amounts of food more often in the day.  In a nutrition class I learned it is better to eat 6 small meals a day instead of the traditional 3 – breakfast, lunch and dinner.  So far I am ok with eating but I am not on medicine yet.  I am getting a liver function panel blood draw and will decide shortly which medicine to begin.  Both are still very expensive under my insurance plan.  The only way I see to lower the cost is to either retire or possibly work part time.  I am not sure I am ready to go there yet.  I have some difficult decisions to make.  I enjoy working but not sure if I can continue full time as I seem to have little energy these days.  I am hoping my energy levels are down because of my recent lung biopsy.  I still have great oxygen levels and feel pretty good most of the time.  Heading into work today.  Hopefully I can work about 4 hours.

      Have a great day everyone.

      Marianne

    • #20006
      Robert Obrien
      Participant

      I have lost 35lbs. +/- since starting Esbriet AND that is the culprit as opposed to simply my disease (IPF).  The transplant team at MGH isn’t overly concerned because my BMI is OK and I certainly could stand to have lost most of those poundage.  I used to love to eat, I mean I loved it.  Now, I actually don’t look forward to mealtime.  A lot of my resistance is due to smell – I actually get turned off by cooking odors that never bothered me in the past.  It can be a real turnoff even before I sit down to eat!  I force myself to eat many of my meals. Having said that, I soldier on because I have to.  I won’t give in to this disease; it will have to come and get me but there may be a transplant before that happens.  You know what?  I think I’ll go get a lobster roll.  Yeah that’s it, that’s one way to overcome my resistance.  Keep on truckin’ everyone!👍😀

      • #20011
        paula
        Participant

        Hi Robert. I am at MGH as well. Have you been put on the list yet? I am almost done with all of the appointments and with any luck, hopefully I will know by the end of July or mid Aug. I will actually be there 3 times next week.

      • #20012
        Cynthia
        Participant

        I haven’t even started meds yet, but I do see my interest in food dying. Like Robert, I used to love to eat, cook and go out to all kinds of restaurants. Funny that you mention a lobster roll, Robert. That’s the one thing I was thinking might appeal to me right now. I guess we’re true New Englanders.

    • #20053
      Robert
      Participant

      I was diagnosed with PF in July 2017 & referred to Mayo Clinic in Rochester for treatment.  Started on Cellcept & Prednisone and still on these.  Dry cough, SOB, sleep problems & fatigue have been my most problematic symptoms until January 2019.  Now since January 2019 have been having increased loss of appetite, able to eat only small amounts at meals, and changes in taste.  Have lost 30 pounds since January (192 then & now 161).  Because of rapid fibrosis progression since October 2018 was referred for lung transplant evaluation in March. Denied for transplant at Mayo & university of Iowa due to  history of heart disease & getting stent for new artery blockage found during Mayo evaluation.  Am now scheduled for transplant evaluation at Cleveland clinic July 22-25 and hoping I will be approved. On supplemental Oxygen 3 L at night, 5L daytime.  Even the simplest of daily activity results in SOB.  I have found this forum to be very beneficial in knowing how others suffer from this disease and knowing I am not alone.  This is my first post so apologize if I have rambled.

    • #20105
      Connie Lum
      Participant

      I have been diagnosed since June 2018 and on Esbriet since October 2018. I am currently asymptotic. I have noticed a lack of appetite and interest in food. I seem to have a heightened sense of smell at times and the worse part is I don’t enjoy wine as much! I believe it is due do the medication.

    • #20108
      Medi
      Participant

      Hi Charlene,

      I am new to the forum.  I was diagnosed with IPF 14 months ago.  I am not taking any of the treatment drugs (nintedanib or pirfenidone) for it.

      I can confirm that eating big meals do impact my breathing and sometimes kick start a cough attack.  As most IPF patient, I suffer from Silent Acid reflux and I believe it is the culprit. I found that taking Gavisvon Advance often helps. Nevertheless, I still have to be careful how much I put in.

      I am practicing a grazing diet, which is not great for social and dinner parties, but it works a lot better and produces better results.  But I have to make sure there is a reasonable balance across 6 or 7 small portion meals.

       

      As for talking and getting breathless, it definitely happens to me. The only solution is talk slow, calm, and definitely less chatter.

       

      Regards,
      <p style=”text-align: left;”>Mehdi</p>

      • #20121

        Hi Mehdi,

        Thanks so much for joining the forums – welcome! And, thanks for contributing to this topic thread, it has been a good one that many folks have discussed.

        I find that eating larger meals has become uncomfortable for me as well, and it can sometimes trigger a cough. Is a grazing diet as simple as it sounds? Meaning, smaller more regular eating throughout the day instead of 3 big meals? You’re right about the importance of finding a balance in those smaller meals, hope that is going okay for you. My only concern about this is for those of us on one of the antifibrotic medications (ie. Ofev) as I have to eat a larger meal in the morning in order to tolerate the drug and again at nighttime. Might be worth looking into this further though! Thanks for sharing 🙂

        Take care,
        Charlene.

    • #20855
      Nan
      Participant

      Hello, I am fairly new to this disease but starting to experience more symptoms as of late. I have really noticed that i can not eat a large meal or i get bloated and and short of breath. I also noticed that i can no longer drink beer. I like beer, i dont drink much of it though however even one the bloating causes me have breathing difficulties :(. i just have sips of my husbands. I have a good appetite and it can be challenging to know when to stop but i am figuring it out. I have lost a couple of pounds, nothing significant. I have only been followed by GP and rad onc. I see internal medicine next week. Anyone know a good respirologist in Kitchener Ontario?

      • #20875
        Mark Koziol
        Keymaster

        Hello Nan, before I was officially diagnosed with IPF I noticed there was a negative side effect on how alcohol affected my condition. I felt my body worked harder to breath and especially when I had to extricate excess phlegm. When I over eat I also have trouble until my food digests. I have a hiatal hernia and an elevated diaphragm which in turn pushes up on my rt lung causing distress. I eat 4-6 small meals per day but sometimes I do over eat and subesequently pay for it. Best wishes, Mark.

    • #20873

      Hi Nan,

      Thanks for joining the PF forums – welcome! I know it is hard to be here, meaning we’re dealing with this dreaded disease but know that we all understand on this site, and sometimes that is really comforting. I sent you a private message as well 🙂

      I find bigger meals are harder for me to have as well, and benefit from 5 smaller meals a day. I don’t have acid reflux (thankfully) but sometimes I know carbonated drinks, like beer, and larger meals can cause an acid reflux issue in some patients. Might this be contributing to how you feel after a big meal? Try the smaller meals and see if it helps. This is also good for our metabolism as it keeps it going. Take care, Charlene.

    • #21091
      Nan
      Participant

      Tonight i made the mistake of eating too much ( if you saw it you would not think it was a lot) and had a glass of wine and i felt so full and SOB. Ugh i need to be diligent in having small meals. I think you are right Mark, alcohol, even in small amounts seems to affect my breathing. Thanks for the advice and like you said Charlene I need to work on the small meals. I really can’t eat much at a time. However my appetite is good, i still love food :).

      • #21103
        Mark Koziol
        Keymaster

        Hello Nan, sorry for the late reply. I had to lose 80 pounds to recieve the transplant so I ate the small meals as well. I always kept some nuts or fruit on the counter so when I would walk in the kitchen aimlessly searching for food I would be able to pop a handful of nuts in mouth or grab a peice of fruit. This would curb my appetite and also provide me with just enough fuel to make it to the next trip in the kitchen. As a lung transplant recipient I still cannot over eat because I have a hiatal hernia and an elevated diaphragm. If I eat too much it affects the hernia, which in turn effects the diaphragm and then finally my donor lung causing me some distress. I am still eating the small meals. However, they sometimes are not as healthy as I would like. Mark

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