Food aversions & loss of appetite

[Charlene Marshall]

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.

[Rene Hakkenberg]

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

[Fred Schick]

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.

[Mark Koziol]

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.

[Rene Hakkenberg]

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.

[Wendy Dirks]

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!

[Wendy Dirks]

@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!

[Karen Martin]

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!

[Wendy Dirks]

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.

[Susan Howitt]

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 !!!

[Jean]

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.

[Charlene Marshall]

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.

[Charlene Marshall]

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.

[Heather]

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

[Jean]

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

[Rene Hakkenberg]

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

[Regina Bolyard]

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!

 

[Mark Koziol]

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.

[Malcolm Mann]

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

Cheers

Mal

[Mark Koziol]

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!

[Rene Hakkenberg]

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

rene

[Malcolm Mann]

Thanks Mark & Rene

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

Na Zdrowie

Mal

[Pat]

why is loss of appetite caused by PF.  

[Mark Koziol]

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.