Pulmonary Fibrosis News Forums Forums PF Communities PF Life: 50+ Weight Management is Hard with IPF

  • Weight Management is Hard with IPF

    Posted by Charlene Marshall on March 6, 2023 at 10:05 am

    To my fellow IPF patients: is weight something your doctor discusses with you at routine appointments?

    I’ve heard from some patients it is, whereas other people say their doctors never bring it up. I wanted to write this forum post about how difficult it is to maintain a healthy weight while living with IPF. Whether the goal is to gain or lose weight, there are a number of factors that make weight management difficult for us.

    Whenever I have an exacerbation or catch a viral or bacterial infection, my regular dose of prednisone is maxed out for a prolonged period of time before I start tapering off it. Prednisone has so many terrible side effects but for me, one of those is an increase in appetite and bloating/swelling of the face. Thankfully I’m not on a high dose of this medication rarely but on the contrary, I am on OFEV daily and that really throws off my appetite, meaning I eat too little. Managing the side effects from medications as they pertain to appetite and/or weight loss and weight gain is something I’ve struggled with since my IPF diagnosis!

    Another factor complicating anyone striving to lose weight is how difficult exercising is when you’re low on oxygen. Not only does exercise often leave IPF patients feeling breathless but low oxygen during exercise can leave patients with headaches, blurred vision/dizziness, and sore muscles, which specialists don’t seem to acknowledge when weight management is brought up.

    Does anyone else struggle to maintain their weight while living with IPF?

    If so, have you found any strategies that help you either consistently gain or lose weight, and maintain it?

    Please share if you have!

    Deleted User replied 1 year, 2 months ago 7 Members · 8 Replies
  • 8 Replies
  • GratefulDeb

    March 6, 2023 at 11:12 am

    I hear you!!! I have gained at least 55 lbs over the past 3 years.  It sucks, I know.  I try to get some exercise but I run out of breath quickly and I am on oxygen 24/7.  I attribute it to Prednisone….which I am now tapering off as I am about to start OFEV (nervous about that).  Prednisone really bloats me up and my appetite is huge on Prednisone.

    You mentioned you are on OFEV.  I am about to start this medication myself and am hoping it might take the weight off and make it easier for me to move around. I am hoping that the OFEV just might eliminate the need for so much oxygen.  I used to be a runner and now I cannot even walk a block without getting winded and dizzy.


    • Nina Merendino

      March 9, 2023 at 2:33 pm

      I am on no meds for PF but on plenty for my ankylosis spondylitis! I am not on oxygen and am not short of breath but I will tell you I have gained 40 lbs since being diagnosed with this. I sm in constant pain in my back and now neck as my bones fuse. I finally have talked my Psych nurse pracctioner and she has started me on Metforin. I will keep you informed of the results. I hate being obese and at 55 was surfing so lie ain’t quite the same. I live by myself and I feel I look so awful that it is hard to want to go out…. No one has ever mentioned my problem with weight until my doctor at he UW wrote that I was obese. So I changd pulmonary docvctors! You have to advocate for yourself these days.

    • Thomas Johnson

      March 10, 2023 at 1:05 am

      Hi Deb,

      I am 2.5 years from my diagnosis and have tried both OFEV and Esbriet.  Neither one seemed to slow down my IPF, and OFEV gave me frequent and sudden diarrhea at inopportune times…not much fun!  My pulmonologist recommended I discontinue those drugs as the “benefits” were not offsetting the side effects.  Neither drug affected my weight one way or another.

      I hope your experience will be much more beneficial.

      Best, Tom

  • Judy Johnston

    March 7, 2023 at 4:23 pm

    Hi, I am not on Pred or either of the PF drugs. I had an exacerbation (after 10.5 years) in which I lost my appetite. Food made me nauseous to even smell it. After things calmed down, I had lost 31 lbs. I asked my PCP for something to stimulate my appetite. I am taking Mirtazapine (which is also used to treat depression. My appetite had picked up. I have gained 11 lbs back since November. This worked for me. I also take an extra reflux med around 2:00 pm everyday. Hope you find a solution! Best of luck. Regards

  • Gerry T

    March 8, 2023 at 1:10 am

    After losing 15 lbs, I’ve been able to stay at 150 lbs for about a year.  I’ve been on Ofev for 6 months now.  It’s been a constant struggle to stay at 150 lbs.  No appetite and periodic diarrhea take their toll.  Now I eat more stuff I like and actually crave on occasion and I drink Boost.  Nutrition takes a back seat these days.  Fortunately, the diarrhea has diminished quite a bit.

  • Theresa Skuczas

    March 9, 2023 at 9:27 am

    I am on ofev; I have been on for a year. I can’t lose weight, and I have diarrhea every day. All day. I don’t eat much cause I feel full fast. ofve doses work but not for controlling weight. Also my face is swollen. I was thinking water retention.

  • Meredith

    March 9, 2023 at 2:51 pm

    Weight management usually depends on my attitude and my prescription meds. I have severe IPF and immediately began Ofev. My doctor perceived little difference between the two but felt the company patient rep was helpful. I was very sick nausea, vomiting, diarrhea for months. My weight did not change. I changed to Esbriet and had few digestive issues.
    I had an AE and began high doses of prednisone for months. Gained 30 pounds and it caused diabetes. My diabetes prescription, Metformin, was added and I limited my carbs to 100 per day and lost 35 pounds. Maintaining at 150 carbs per day. Metformin is good for PF.
    ASK YOUR DOCTOR. I’m just another patient with no medical background.

  • Lee

    March 9, 2023 at 5:27 pm

    When I was diagnosed with IVF two years ago, I became depressed, was on oxygen at 5 L, 24 x 7, and had very little appetite. I lost 30 pounds, mostly muscle and became emaciated. Once I realized that inactivity was going to be the cause of my death, I started exercising very slowly at first, and always with oxygen. It took a year for me to regain my weight back to 172 pounds. I maintain that weight constantly, and I exercise every day. I walked 4 miles a day, 2 miles in the morning, and 2 miles in the evening, and I work out in the gym six days a week. I also ride a bicycle. None of these are easy because my oxygen saturation drops Precipitously , however, I use oxygen and work out, and I have gotten healthier and stronger as a result. There was a time just 14 months ago. I couldn’t walk 20 steps without being exhausted and short of breath. I started very slowly, but exercise and nutrition have save me , I don’t take any of the anti-fibrotic drugs, however, I do take a few herbal supplements that seem to help. I tried many different supplements, but have found the most important things are daily exercise, good whole food, nutrition, and a good nights sleep of eight hours every night.

  • Thomas Johnson

    March 10, 2023 at 1:13 am

    Hi Charlene,

    I have had similar experiences as you. My BMI hovers around 30 and I think the lack of exercise has something to do with it. Besides the dyspnea I have, I need a complete knee replacement, which severely limits my exercise. Unfortunately, I am past the age for safe major surgery.

    I really have not noticed any lack of appetite.

    Good luck!

    Best, Tom

  • Deleted User

    Deleted User
    March 10, 2023 at 4:18 pm

    If you are able to exercise at home, there is an online dancercise class for Seniors (like Zumba Gold but with some resistance bands too).  Here are the details:  On Zoom every Friday 11 am Pacific Time, USA-  is easy-level Low Impact Dancercize to Contemporary Christian Music: Just open Zoom and join Meeting ID# 895 8345 8081 Passcode: 290532  or use the link:  https://us02web.zoom.us/j/89583458081?pwd=SjBFanRIUG0yV1UxNlgwbTUrWE5qdz09

    TOTALLY FREE, no strings attached.

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