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    • #32452


      My mother has lost a lot of weight, down below 100 lbs. Why does this happen and how can it be helped?

      Please provide any insights or assistance.

    • #32473

      We were told at a Better breathing class this week, that weight loss can be because of poor breathing. Lack of oxygen starves the muscles and to make this up the body tends to absorb firstly fat and then muscle condition. I imagine that diarrhea also can have some effect, as nutrient is lost from the body system. My weight and muscle condition has reduced slowly over time probably because of my IPF of seven years or so.

      Tony Bishop. Kaiapoi, New Zealand.

    • #32485
      Christie Patient

      Hi Jason, weight loss is common with PF. Tony has provided some of the reasons why, and the medications can also affect our weight gain/loss. She might benefit from talking to a nutritionist who can help design a high-calorie diet for her to help her regain some weight. I’m not a doctor but here are some suggestions just based on what I’ve learned in my own health journey.  Supplementing throughout the day with nutritional shakes (Boost, Ensure, etc) is one way to get more calories without a lot of bulk if her appetite is poor. Foods high in healthy fats is another–avocados, nuts (and nut butter), cheese, eggs, salad dressings made with olive oil, and fish, are some examples. If she likes smoothies, try adding a spoonful of peanut butter, chia seeds, flax seeds, hemp seeds, etc. MCT oils (derived from coconuts) are an excellent addition to lots of foods, and even coffee, as they emulsify easier than vegetable oils. The body burns the most accessible energy source first, so if you are consuming a lot of good fats, the body does not target its own fat stores for energy, which allows us to put on or maintain more weight. If she is having problems with diarrhea, avoid foods with lots of fiber, as that will only worsen the issue and can lead to dehydration.

    • #32490

      Thank you Christie. I am not too worried about my gradual weight loss. My bmi is too high anyway and after two hips being replaced a number of years ago, some less weight takes the load off major joints. I will follow your advice on nutrition needs.    Tony.

      • #32521
        Phyllis Della-Latta

        The high caloric diet & supplements like Ensure are good suggestions but many PF patients have lost their appetites & cannot consume a lot of food. It is very depressing when weight loss continues despite your best efforts. My husband didn’t even want to look at himself in the mirror.

        • #32599
          Christie Patient

          Totally understandable, and it is important to remember that it isn’t always as easy as “eat more fat”. Thank you for mentioning that, Phyllis. I know that medical marijuana is often prescribed as a way to improve appetite. I’m not sure what other options there are. My friend’s grandmother benefitted greatly from medical marijuana though, when she was ill and lost her appetite.

    • #32605
      Luciano Molina

      I’ve gone from 260 to 222 lbs. in one and a half years and welcome the weight loss; I need to get to at least 215 before I can be considered on the transplant list.  Being at age 72, I not only battle my weight but also my age.  I have my fingers crossed.

    • #32607
      Tom Hartigan

      I’ve been on Ofev 150 mg since 10/21.  I had serious issues with diarrhea and weight loss which troubled me and my family.  I added an ensure to my daily diet but it decreased my appetite.  I noticed my weight loss came after each bout of diarrhea.  My pulmonologist has recently moved me to the 100 mg of Ofev and so far so good.  No diarrhea, better appetite and I’ve gained 4 lbs.

      • #32625

        Is the 100mg of ofev effective at slowing down the scarring?  My doctor tells me that the trials were done on the 150mg twice a day.

    • #32610
      Thomas Johnson

      I’m 74 and was diagnosed two years ago.  My BMI is a bit over 30 and I have been waiting for the reduced appetite to befriend me!  No such luck.  I did lose some weight last year when I was on OFEV (diarrhea), but since I switched to Esbriet I have no diarrhea but also no weight loss, though my legs are thinner than pre-IPF.

      • #32622
        Karen Martin

        I hear that, Thomas!  I was diagnosed 3 1/2 years ago and also take a couple of other meds that are supposed to be linked to weight loss.  I know this is not an ideal way to lose weight, but it was a bright spot.  🙂  One day.

    • #32612

      The pulmonologist told me that I was expending an additional 400-600 calories a day just from the work of breathing harder.  Also when breathing harder one also gulps in more air which make stomach and bowel feel fuller and can further increase work of breathing.  Oxygen obviously helps and also pacing one’s activity and rest.  Weight loss was my first sx, and starting on OFEV didn’t help because of GI sxs and loss of appetite.  The loss of appetite is hard to deal with.  After my transplant I ended up with a feeding tube for 6 mos because I could not get the calories I needed.  Eventually my appetite returned.  I drank a lot of milkshakes then.  Prior to surgery my wt was 100# (down from 125#), after surgery went to about 88# and continued tube feedings and multiple small feedings until I reached 110#.  I have been able to maintain that wt for 9 mos, and would like to gain a few more because it is still easy to lose and not so easy to gain it back. Talking to a nutritionist helps.  Good luck!

    • #32617
      Alfie Lee
      • IPF and wt loss……I’m 83 yrs young and from a family where most of the males are slender or Ectomorph…..in other words overweight has not been an issue…..prior to my experience with IPF of 5-6 yrs, appetite was not on an issue for me other than it wasn’t noticeable to me and at 6ft and 165 lbs and I had to remind myself to eat. However as my earlier undiagnosed IPF began to seriously rear its ugly head I began to feel Ill with many of the symptoms we all experience with this disease and a zero appetite……at 141 lbs I knew I was in trouble. Eventually what was thought to be COPD was correctly diagnosed at Sansum Clinic in Santa Barbara as IPF Severe. Part of my initial treatment included an introduction with OFEV. First 100mg then 150 when things seemed tolerable with 100mg. Within a short time OFEV150 was a physical disaster for me and I stopped. After a months pause I started or returned to 100mgs…….after about 6 weeks I am at another pause…….one more try at the lower dose. However, during the course of my treatment from Sansum, there was and continues to be a bright spot from my medical treatment program…….a prescription and on-going daily ingestion of 5 mg of Dronobinol (THC) two hours before evening meals plus a OTC Pepcid. This treatment has worked for me where I have been able stabilize my wt not at my desired wt but still mid 140s. So folks for those of you who can get beyond the “Devil Weed” culture, you might just find that this little green pill will enhance your appetite and add a little comfort to your souls.


    • #32624
      Bob Chiu

      I’m 74 yrs old and peak weight was 240lbs. Over 2 yrs of taking Ofev and Cellcept my weight went to 185 lbs just before transplant. After transplant in May 2022 now my weight is 167 lb but I believe it’s stablizing as my body starts to recover from the surgery. Throughout those 2 years I exercise everyday and led a normal life albeit carrying oxygen everywhere.

      I think most of us will lose weight due to lack of oxygen, medications, diarrhea, etc., And the way to deal with it is to find ways to feed enough calories despite lack of appetite and exercise (however mild or little.) For me I ate even there was no appetite. Actually initially I didn’t mind the weight loss as I ned to get to an BMI of less than 30 in order to be considered a transplant candidate.

    • #32632
      Jerry Genesio

      My weight dropped quite rapidly from 205 pre-diagnosis to 180 today, 2.5 years after my diagnosis. I had dropped to 176 but for the past few weeks, I’ve been drinking an 8 oz container of Ensure with lunch. I like the taste and Ensure has several flavors including butter pecan, my favorite, and of course, chocolate (dark & milk), strawberry, coffee, mocha, and vanilla.

    • #32641
      Harletta Carathel

      Im 5’7″ and now weigh 109 fully clothed, to be considered for a transplant my BMI needs to be 18. Im now at 17. I have been on Ofev 150 for about two years.
      It’s hard to breathe after eating big meals so I try to eat healthy snacks, sometimes not healthy, during the day. But so hard to gain weight.
      Also does any one take a bone density increasing medication? I am hesitant to start one due to possible side effects.

    • #32642

      I take alendronate once a week for osteoporosis. I’m careful to drink lots of water with it and wait before eating to avoid esophagitis. I haven’t had any jawbone problems but I take good care of my teeth.  My doctor has me take a year off every few years to try to avoid the bad side effects and so far it has worked.                                                                                                           Good luck with your decision.




    • #32742
      Adele Friedman

      I also take alendronate and have since before diagnosis, no problems before or since.  I take mycophenolate and Symbicort (much happier with this than nebulizers).  I have lost weight, but it’s been deliberate, via lower carb eating, trying to keep it to around 100 g. a day.  I’ve noticed on the Facebook pages that many seem to have been overweight in the past and are trying to lose to be considered for transplant.  I have never heard of someone being required to have a BMI of <18, though.  It’s possible my breathing burns extra calories, but I realized years ago, losing weight is mostly about what we eat.  I have a good appetite now but eat with more control.  Trying to reduce inflammation is part of it.  Being ready if I decide to pursue transplant if I get bad enough.  Being able to move/bend more easily.

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