How IPF can make it difficult to maintain a healthy weight

Symptoms and medication side effects pose issues for this writer

Charlene Marshall avatar

by Charlene Marshall |

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Achieving and maintaining a healthy weight, either through losing or sometimes gaining pounds, is an important part of our overall health and can often be accomplished through a nutritious diet and regular physical activity. However, weight maintenance becomes more complicated when you factor in a chronic illness.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, it was a shock to everyone, including my medical team. IPF typically affects older adults, though I’m working hard to raise awareness of how it affects younger people. Getting diagnosed as a 28-year-old socially active swimmer and hockey player was unusual.

For nearly a year, I continued to be active and keep up with those hobbies, but an IPF exacerbation slowed me down in spring 2017. Sports offered exercise benefits, such as helping me to maintain a healthy weight, build muscle, and feel strong, but I also enjoyed playing because I found community in my teammates.

But as my lungs worsened with each passing year, I eventually had to stop playing sports. Now, I regularly require supplemental oxygen just to breathe.

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I still try to remain as active as possible by walking my dog or, recently, taking up a gentle aqua fit class. While any kind of movement or exercise can benefit someone living with IPF, these activities don’t burn the same amount of calories or give me as much of a cardio workout as swimming or hockey did. As a result, they aren’t as effective for weight maintenance.

Following are a few additional ways that IPF can make it difficult to maintain a healthy weight.

Medication side effects

There are currently two drugs approved by the U.S. Food and Drug Administration for the treatment of IPF, and I’m on one of them. This medication, Ofev (nintedanib), is known to cause gastrointestinal (GI) side effects, namely diarrhea and vomiting, in some patients. As you can imagine, it’s hard to consume a lot of calories when you feel unwell. I’ve heard from many IPF patients that they struggle to gain weight while on this medication due to its side effects.

Personally, I’ve found that Ofev is easier on my stomach when consumed with specific foods or drinks. For example, it’s imperative that I drink lots of water and avoid dairy after taking it, or I’ll be sick to my stomach for hours. To lessen the GI side effects, I also have to take Ofev with protein. Of course, you should always consult your doctor before making any changes to your diet or medication regimen.

Burning excess calories through basic functions

I vividly remember a clinician telling me shortly after my diagnosis that IPF can cause unexpected weight loss. As fibrosis develops in the lungs, the patient has to work harder to breathe, which simply burns more calories. Additionally, the dry cough that many IPF patients are plagued with burns calories as well.

Surprisingly, these two basic metabolic functions can make it more difficult for someone with IPF to put on weight.


IPF exacerbations can be caused by a variety of factors, such as disease progression or a viral or bacterial infection. For me, exacerbations have been due to the latter. In addition to antibiotics, I’m often put on a high dose of prednisone. While this steroid works wonders in calming an exacerbation, it wreaks havoc on my appetite and fluid retention, especially in my face.

While taking prednisone, I find myself snacking often, and not always on healthy foods. Any weight I gain is extremely hard to lose since my breathing difficulties make vigorous exercise difficult. I consider prednisone a necessary evil, as it certainly doesn’t help patients striving to lose or maintain their weight.

What makes it challenging for you to gain, lose, or maintain your weight as an IPF patient? Please share below.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


Keith Emery avatar

Keith Emery

I was diagnosed with IPF back in September 2015, after a bout of pneumonia. Last year I contracted Covid 19 which wreaked havoc with my fibrosis, causing it to at least double in size. In January 2023. I commenced a course of the drug OFEV. I have all of the side effects most days and although losing nourishment through vomiting and diarrhea, I am rapidly gaining weight, nine pounds since early January, and rising. I believe my diet is good but thanks Charlene for your tip about dairy.

Paul Bocconcelli avatar

Paul Bocconcelli

I find it really interesting that you were diagnosed in 2015 but didn't start OFEV until 8 years later. I was diagnosed in fall of 2020 and started OFEV in spring of 2022. Not my favorite medication due to side effects, for me primarily maintaining body weight and nausea reducing desire to eat.

Nan Clarke avatar

Nan Clarke

I happen to have two issues that do not help my weight. I have IPF but I also have had three back surgeries, have degenerative disc disease (exacerbating the effects of back pain) and osteoarthritis. These conditions make maintaining a healthy weight almost impossible. Now that I have an oxygen bottle I must carry with me, it is even worse on my back. I am slowly cutting my portion sizes and have been trying to get to a decent weight. I am not there yet but the trend is a very slow decrease. It is important for me to be at a desired weight before it is time for a lung transplant. I owe it to myself and my husband to control all variables within my power that help yield a successful transplant. I want to live longer but with full use of my lungs. I do not like the restraints that IPF is already imposing on our lives. We are in our later years now and want to be experiencing time seeing the places and doing the things that we only read about in geography books and romance novels. With that as my motivation, I will be successful in getting to the weight at which I feel most comfortable. I take cortisone treatments and these treatments, as with all steroids, also increase my desire to eat.

Alfredo Gutierrez avatar

Alfredo Gutierrez

I've found that anything with grease or dary can cause me to suffer from diarrhea. To help me avoid this I tried drinking different nondary products. The only thing that I found to be useful and easy on my digestive system. Rice milk I found was the only product that I found was very easy on my digestive system. Unfortunately it's getting more expensive just as everything else.

Vir Sain Chowdhry avatar

Vir Sain Chowdhry

I suffer from fatigue / shortness of breath when I walk /get ready .This happened after I got Covid ( Delta variant ) in May 2021 . My oxygen level remains normal ( 97-98 ) .Would that suggest my lungs are ok ? Or May be the heart was affected by virus ? Would like a likely cause and your views .


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