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    • #25323
      Wendy Dirks
      Participant

      Hello all –

      I’ve known for some time that PF can cause a loss of appetite, but can it also cause food aversion? Over the last couple of months, I’ve noticed I simply cannot eat some things that I’ve always eaten. I feel an actual aversion to them. Last night it was feta cheese on my spinach salad, something I’ve loved all my life. I also frequently find it very unpleasant to eat some types of meat. I was a vegetarian for many years but began eating meat again after I got married because my husband eats it. It isn’t all meat – it’s just some. I am no longer able to cook and my husband has taken over that chore and I feel so badly when I take a bite of something he’s prepared and then have to say, “I’m sorry, I can’t eat this.”

      Has anyone else experienced anything like this?

      Best wishes,

      Wendy

      • This topic was modified 1 month, 4 weeks ago by Wendy Dirks.
    • #25330

      Hi Wendy,

      Thanks so much for bringing up this topic – it is certainly one I can relate to! I find I have both food aversions to things I once liked, and also want certain foods I’d never really cared for before. Do you find both things too or more just the aversion to previously-liked foods? Oftentimes for me the aversion comes from sweet foods, I find I am so much less tolerance of sweets/sugar these days. Sorry to hear this is something that is impacting you too!

      Take care and thanks for writing.
      Char.

    • #25348
      Rene Hakkenberg
      Participant

      Hi Wendy and Charlene, I have IPF and tried Ofev off and on for 2 years but just could not tolerate it (no appetite, diarrhea and weight loss). Since the beginning of this year I am taking Esbriet and tolerate that without a problem, except again no appetite and food aversion.  Wendy mentions that the lack of appetite is caused by the PF. I always thought that the lack of appetite and food aversion was caused by the medicines and not by the IPF. Can anybody clear this up for us? The possible side effect of lack of appetite are mentioned in both Ofev and Esbriet instructions.

      Has anybody tried to take both Ofev and Esbriet?

      Thank you,

      rene

    • #25351
      Fred Schick
      Participant

      I tried to take Esbriet and Ofev, separately, over a time span of one year.  Both medications made be very ill, uncontrollable diarrhea, extreme fatigue and more coughing that normal.  I finally told my Doctor that I felt the treatment was worse than the disease and so he agreed I should stop taking it.  This is just me because others in my support group have successfully taken both drugs, some for over four years.  I don’t really crave food and eat because it is time to eat.  My weight loss has been moderate but I have started, with my doctor’s approval, to drink a can of Ensure about 4 days per week.  This stabilized the weight loss and increased my protein intake.

      In summary, we are all affected differently by IPF;  work with your doctor to develop a treatment plan that helps you cope with the disease.  I also suggest daily, moderate exercise.

    • #25353
      Mark Koziol
      Keymaster

      Hello Fred, thank you for sharing. I’m happy your weight has been controlled and you are retaining nutrients with your protein drink. There are many ways to approach this disease. There are no wrong or right answers. Everyone must do what they need to do in order to have quality of life. Take care Fred, mark.

    • #25354
      Rene Hakkenberg
      Participant

      Hi Fred, thanks for your quick response. If I understand you correctly you did not use Ofev and Esbriet together. That really was my question. My body tolerates Esbriet but not Ofev. But despite taking Esbriet my IPF has worsened while taking Ofev, albeit with major diarrhea problems, my IPF was stable. That is why my question about taking both together.

    • #25355
      Wendy Dirks
      Participant

      Hi, Char – The biggest aversion I am having is to meat. I doubt I’ll ever have an aversion to sweet things. I can eat them no matter how I feel, especially chocolate. I guess that’s not a good thing, LOL!

    • #25356
      Wendy Dirks
      Participant

      @renehakkenberg

      Hi, Rene – I have hypersensitivity pneumonitis and my appetite has been diminishing steadily as the disease progresses. I think it is probably due to the oxygen required for digestion rather than any medication as I have only recently (3 weeks ago) started any medication for my illness. The food aversions did start after I started CellCept (MMF). I don’t take either Esbriet or Ofev, so I think that decrease in appetite is due to the illness. I have had very few side effects from MMF, but queasiness is one of them. I also practice what is called “intuitive eating,” a form of eating that relies on recognising feelings of fullness and hunger rather than food restriction like a diet. I’ve become quite good at it so it may be that I am very attuned to a lack of appetite as a result. I just don’t feel that hungry most of the time, although my husband just made my favourite dish, a “taco” soup and I ate every bite!

    • #25368
      Karen Martin
      Participant

      I have been taking Esbriet for a year now and also have loss of appetite and food aversion. I was one of those people who could eat the same thing for each meal day after day and be happy but that has changed. I am using Boost/high protein to supplement a few days a week. Like you, Wendy, sweets are probably never going to be an aversion for me, especially the chocolate. As to that, I figure life is too short to deny myself a guilty pleasure now!

    • #25370
      Wendy Dirks
      Participant

      Karen, I never feel guilty when I eat chocolate! It’s just a pleasure!

      On a more serious note, that’s one of the nice things about intuitive eating – if you give yourself permission to eat whatever you want, after a while you discover that you don’t really want to overindulge in anything. I used to avoid buying ice cream and then occasionally buy some and eat the entire pint because it was a “treat.” Now I buy ice cream and it just sits in the freezer for months because it is no longer a forbidden treat – it’s just another food.

    • #25412
      Susan Howitt
      Participant

      My appetite has only recently started diminishing in the last couple of months (now at stage 4 of CPFE) have always refused to take either Esbriet or Orfev so it has to be the disease, the only thing I take is Prednisone which can make you so hungry you could eat all the neighbourhood scabby dogs. My taste is definitely changing, things I used to like I now don’t, I will crave something but when I get it I don’t want it.  I have to eat little and often and it is mostly fresh fruit at the moment  and of all things, basil leaves !!!

    • #25433
      Jean
      Participant

      Hi all, I’ve been on esbriet since sept 2016 and do have an aversion to beef except for barbecue.  Cannot have chocolate because it keeps me awake all night.  The decaf green tea does also.  Cannot drink coffee unless  it is decaf.   Several months ago lost ten lbs due aversion to eating.  Dont understand what that was about but all is ok now.

      Have been in rehab since 2013 up until this year when they closed due to covid19.  Now do recumbent bike and keep praying.

    • #25462

      Hi Jean,

      Thanks so much for sharing your experience with us, and sorry to hear of your sudden aversion to eating a few months ago. Glad things are okay now and you’re figuring out a way to manage the Esbriet side effects. Keep up the great work with biking, I know that is easier said than done! Take care, Char.

    • #25473

      Hi Wendy,

      Thanks so much for sharing and giving me a giggle — I’m right there with you, I don’t think I’ll ever develop a food aversion to chocolate 😉
      Char.

    • #25477
      Heather
      Participant

      Hi All,

      I’m here because my husband was diagnosed with IPF in March 2020, at the age of 45. I’m learning from everyone here. He went on Ofev in March, and it made it him so ill he had to stop taking it (dropped 10 pounds off his already lean frame.)  During that time he had no appetite and developed an aversion to eggs. We used to eat eggs at least once a week. He can no longer eat them at all. And he used to drink a lot of milk but no longer wants it. But he still enjoys yogurt. It’s been hit or miss. I’m glad to know he’s not alone in this.

      –Heather

    • #25480
      Jean
      Participant

      Hi charlene, i remembered one other food item which has become a big annoyance. Every time i eat my nose runs and it stops soon after eating. I looked it up on google and find it seems to be called gustatory rhinitis, a stimulation of a nerve. Wow, what else will happen.

      Thank you for all your kind words to everyone. Best.

      J

    • #25483
      Rene Hakkenberg
      Participant

      Hi Heather, no, you are not alone and neither is your husband, even at this relatively young age of getting diagnosed with IPF. I was diagnosed December 2017 and was put on Ofev. For 2 years I struggled. Diarrhea, aversion to food, weight loss. Starting at a low dose and slowly building up to 2x150mg daily, had to stop taking it because of the side effects. Stopped for a month and tried again several times. My IPF remained quite stable during this period, but simply, I could not tolerate it. Then the doctors put me on Esbriet 8 months ago and I tolerated it much better, except for the lack of appetite. However my IPF worsened (CTscan and PFT) and doctors now want me to try Ofev again.

      Your husband is so young, Heather, have you considered a lung transplant at some point?

      I wish you strength and some luck would help too.

      rene

    • #25510
      Regina Bolyard
      Participant

      I’m curious to know how long it took to develop food aversions after beginning Ofev. So far tiredness is the only side effect that is impacting my daily routine. I still want to eat everything I had been before beginning treatment. I really have to restrain myself from over eating while I’m not feeling like moving. I put my stationary bike where it is always in my sight to nudge myself to exercise. I think I need to tape a snarky sign on it that will motivate me more.

      I am only taking 100 mg b.i.d. of Ofev at this time. I expect my dose to be increased if liver enzymes appear normal at testing. I just started taking it on August 31st, so it’s early days for me. I wonder if a dosage increase will have more of an impact, as side effects go.

      Thank you all for sharing your experiences and your humor… I really do appreciate it!

       

    • #25515
      Mark Koziol
      Keymaster

      Hello Regina, the aversion to food when taking Ofev sometimes occurs almost immediately. The gastro problems also begin immediately for many patients. It looks like so far so good. I didn’t have any food aversions but I did have several bouts with gastrointestinal issues. Looking back most of the time it was my fault because I wanted to indulge in a forbidden food such as spicy buffalo wings or a juicy fatty hamburger. I don’t think unhealthy foods and Ofev go hand in hand. I hope you have no food aversion and tolerate the Ofev without gastrointestinal issues. Take care, Mark.

    • #25520
      Malcolm Mann
      Participant

      I’ve been on Esbriet for 4 months, I’m developing an aversion to beer, this is un-Australian.

      Cheers

      Mal

    • #25521
      Mark Koziol
      Keymaster

      Hello Mal, I am so so sorry to hear this disturbing news. I hope this problem passes sooner than later. Again, sorry to hear. And as we say in my Polish family;

      Na Zdrowie!

    • #25522
      Rene Hakkenberg
      Participant

      So, Mal, what’s more intolerable, life without Esbriet or life without beer. The answer is obvious. Cheers.

      rene

    • #25532
      Malcolm Mann
      Participant

      Thanks Mark & Rene

      I’m not one to give up easily, I shall persevere

      Na Zdrowie

      Mal

    • #25530
      Pat
      Participant

      why is loss of appetite caused by PF.  

    • #25536
      Mark Koziol
      Keymaster

      Hello Pat, I could not find a definitive answer for you on your comment. Loss of appetite is listed on symptoms for pulmonary fibrosis and interstitial lung disease but no particular reason is given. Just some very vague reasons. I will keep searching for a definitive answer. Take care, Mark.

    • #25537
      Mark Koziol
      Keymaster

      Hello Mal, love that attitude!

    • #25547

      Hi Jean,

      Wow – how unusual: to have your nose run while eating but then it stops. I’d never heard of this before, and I’m curious if others have to deal with this as well? I know @prwillie (Patricia) is having a tough time with her nose running while on oxygen.

      After you found out the cause of this, were there any suggestions on Google to get stop it?

      Take care and thanks for writing to us.
      Charlene.

    • #25562
      Connie Lum
      Participant

      Hi All,

      I noticed a loss of appetite that comes and goes. I’m on Esbriet. I noticed an increase in my sense of smell and I don’t have an aversion but I don’t enjoy my wine anymore. A real bummer. Lots of food taste very salty too.  I also noticed that when I’m done eating I’m done. I used to eat everything on my plate but not anymore, it’s as if a switch is turned off. Very interesting. Thanks for bringing up this topic.

    • #25596

      Hi Connie,

      Thanks for writing and contributing your thoughts to this thread. I don’t have many food aversions myself from Ofev (some, though) but my sense of smell has drastically increased like you. Very unfortunate the aversion to wine though, sorry to hear that from one wine lover to another 😉

      Char.

    • #25613
      Rene Hakkenberg
      Participant

      Hi Wendy, thank you for your reply. Your credo that lack of appetite and food aversion is a result of the disease and not the medicines makes a lot of sense, considering your experience. May be others that are not taking Esbriet or Ofev can contribute to this discussion. Many people want to lose weight but in my case I desperately want to gain weight which is so difficult if one has a food, any food, aversion.

    • #25614
      Susan Howitt
      Participant

      My sense of smell is extremely heightened, some times wish it wasn’t as they have been muck spreading recently here yuk.  Has to be the disease because I am not on tablets except Prednisone.  My taste buds are definitely affected too. Can’t say I have food aversions just don’t like things I used to or I will fancy something and when I get it I don’t want it, like I still have a bar of chocolate lying around, unheard of before, would be gone in a couple of days and it is still here after two months !!  I also feel very full after a small amount of food, is that the fibrosis pushing on the stomach I wonder.

    • #25615
      Fred Schick
      Participant

      I have not taken Esbriet or Ofev for nearly two years so I can’t blame drugs for lack of appetite nor for increased sense of smell.  Last evening, I visited my son’s home and my granddaughter had several aromatic candles burning.  Even though the scent was mild, it seemed very strong and objectionable to me even though the other adults did not notice the smell.  Prior to IPF, I would eat copious amounts of chocolate and loved desserts.  If we order dessert now, it is only because my wife wants it and insists that I share it because weight loss is a problem for me.  I never finish my meals, even if the food was a life long favorite.  I also refrain from snacks, food or drink after dinner because my stomach feels bloated and my sleep is affected.  I believe that IPF affects appetite, taste and sense of smell.

    • #25616
      Mark Koziol
      Keymaster

      Hi Fred and Susan, thank you for sharing. I still have a great sense of smell. Any type of fragrance or smell I can’t identify with may put me in a coughing spell. Thankfully not as bad before transplant but still cumbersome. I can also identify with the full stomach or the feeling of it after a small meal. Thank you both again, Mark

    • #25617
      Susan Howitt
      Participant

      Hi Fred

       

      Reading back it seems to be any lung disease is the cause, I haven’t got IPF but CPFE and have exactly the same problems.

    • #25618
      Doug Batten
      Participant

      I too have a loss of appetite, but it doesn’t seem to be as bad most. I eat because it is a habit. I just want to throw this out there for all you chocolate lovers. Chocolate is made from cocoa. Cocoa comes from trees. Therefore chocolate is a fruit!

    • #25620
      Rene Hakkenberg
      Participant

      Hi All, we have discussed lack of appetite and aversion to food in this forum. Now, what is the solution if one does not want to loose weight. Has anybody found a way to stimulate appetite? I have heard that cannabis may do that but have not tried it yet.

    • #25621
      Susan Howitt
      Participant

      Prednisolone makes me want to eat a scabby dog !!  Can’t say that I have no appetite, it is just that food hasn’t the attraction it once had.  I still want to eat just don’t want it once prepared most of the time, just doesn’t taste right somehow, even so I am NOT losing weight even though I need to.

      There is no way I can get cannabis here still very illegal though I do have CB oil cannabis without the active ingredient, haven’t found it does anything for me, great for my dogs arthritis though !!

    • #25632
      Karen Martin
      Participant

      @reglois

      Hey, Susan (Howitt). I also have CPFE. Are you on meds for the fibrosis? I would love to compare notes with you if you don’t mind. You are the first person that I have come across with the same diagnosis. Would you consider contacting me? [email protected]
      Karen

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