• mark-koziol

    Member
    September 11, 2020 at 6:03 am

    Hello Mal, love that attitude!

  • Charlene Marshall

    Member
    September 12, 2020 at 10:53 am

    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.

  • clum

    Member
    September 15, 2020 at 2:32 pm

    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.

  • Charlene Marshall

    Member
    September 18, 2020 at 10:41 am

    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.

  • rene-hakkenberg

    Member
    September 22, 2020 at 9:54 am

    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.

  • susan-howitt

    Member
    September 22, 2020 at 11:13 am

    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.

  • fred-schick

    Member
    September 22, 2020 at 2:37 pm

    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.

  • mark-koziol

    Member
    September 22, 2020 at 3:21 pm

    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

  • susan-howitt

    Member
    September 22, 2020 at 4:30 pm

    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.

  • doug-batten

    Member
    September 22, 2020 at 4:49 pm

    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!

  • rene-hakkenberg

    Member
    September 22, 2020 at 5:35 pm

    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.

  • susan-howitt

    Member
    September 22, 2020 at 7:22 pm

    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 !!

  • karen-martin

    Member
    September 24, 2020 at 4:21 pm

    @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

  • bruce-f

    Member
    June 23, 2023 at 11:28 am

    Hi everyone—

    I have been taking OFEV since my IPf diagnosis last year, and have experienced the food aversions, smell sensitivity, and nausea that so many others experience.

    For me, ingesting protein at the time I take my OFEV seems like the most important safeguard against vomiting, and I have found that Fairlife milk products meet many needs at once: it is lactose-free, fortified with protein, and it is caloric. Plus, they have chocolate milk! (A serious note of caution, though: there is no fiber in this protein-rich milk, so be very careful to consume loads of fiber in some form; Metamucil or other fiber supplements are necessary for me to drink the Fairlife milk.)

    I have found that cannabis is a very reliable appetite stimulator. I have not been much of a weed person since I was a kid, but I find that oral cannabis an hour or two before dinner helps me not only eat, but to find the familiar delight in food that I suspect most OFEV patients miss dearly.

    I am still researching what cannabinoids are most helpful in controlling my nausea and stimulating my appetite. One question is whether non-psychoactive cannabinoids can help with nausea and appetite. My next step is to contact the Medical Cannabis Research Center at UCSD to learn what we know about helping people with nausea and food aversions; stay tuned!

    All the best to my fellow OFEV patients! It is a miraculous medicine, although managing the side effects is a challenging and ever-changing puzzle.

    Bruce Fort

  • bruce-f

    Member
    June 23, 2023 at 11:28 am

    Hi everyone—

    I have been taking OFEV since my IPf diagnosis last year, and have experienced the food aversions, smell sensitivity, and nausea that so many others experience.

    For me, ingesting protein at the time I take my OFEV seems like the most important safeguard against vomiting, and I have found that Fairlife milk products meet many needs at once: it is lactose-free, fortified with protein, and it is caloric. Plus, they have chocolate milk! (A serious note of caution, though: there is no fiber in this protein-rich milk, so be very careful to consume loads of fiber in some form; Metamucil or other fiber supplements are necessary for me to drink the Fairlife milk.)

    I have found that cannabis is a very reliable appetite stimulator. I have not been much of a weed person since I was a kid, but I find that oral cannabis an hour or two before dinner helps me not only eat, but to find the familiar delight in food that I suspect most OFEV patients miss dearly.

    I am still researching what cannabinoids are most helpful in controlling my nausea and stimulating my appetite. One question is whether non-psychoactive cannabinoids can help with nausea and appetite. My next step is to contact the Medical Cannabis Research Center at UCSD to learn what we know about helping people with nausea and food aversions; stay tuned!

    All the best to my fellow OFEV patients! It is a miraculous medicine, although managing the side effects is a challenging and ever-changing puzzle.

    Bruce Fort

  • ron-price

    Member
    December 28, 2023 at 2:43 pm

    I am on esbiret since July 2023.I am 74 years old and was diagnosed in April of 2023 (even though it showed up on a cat scan for other reason, no one mentioned it at the time) my appetite is not what it used to be.I eat less but have still gained 9 pounds.! Has anyone else had this happened.I take 3 esbiret 3 times a day and tolerate pretty good except poor appetite and a lot of itching at times.have liver tests every 28 days.all normal.Ron Price

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