Why do IPF patients lose weight and how to help

[tonybishop]

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.

[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.

[tonybishop]

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.

[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.

[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.

[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.

[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.

[Millie]

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.

[Tom Hartigan]

I believe that the trials were done at 150 but I couldn’t handle the diarrhea.  My pulmonologist said that the 100 would be as effective on the scarring.

[Thomas]

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.

[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.

[Kristine Miller-Pinti]

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!

[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.

 

[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.

[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.

[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.

[Margaret]

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.

 

 

 

[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.

[Mike]

I found new culinary freedom with my IPF onset.  I have a fast developing lung scarring and I don’t like it, but I accept it.

So I’ve learned to cook recently, and here’s my response to my diagnosis: calzones, pizza, chocolate chip cookies, banana bread with vanilla frosting, various cakes and muffins, chili con carne, and a large bowl of ice cream every night.  Home made chicken soup with homemade bread, an occasional salad, and fruit keeps my plumbing moving.

[Janet]

I wish I knew. I was slender before IPF and have lost 30 more pounds in the past couple of years. Food tastes bad, so I must force myself to eat; every meal is a battle. I also have GERD, as s many of us do, so I have diarrhea and gas. If I drink a nutrition shake mid-morning, then I can’t eat lunch. I look terrible and can’t find any clothing that fits me. My pulmonologist says that right now my weight is more concerning than my IPF. I have worked with a nutritionist and am following her suggestions as best I can. I don’t know where to turn.

[Denis Ryan]

Hi Janet, I thought you w
were describing me there in your letter. I have IPF since early 2019. Am on 100 mg OFEV twice daily but little or no side effects. Lost 140 lbs over 2 years. Food a battle, no appetite, try to eat 5 small snacks daily including food supplements such as Fortisip. Receiving hospital dietitions advice but still not putting on any weight. Not sure where I go from here but tired of trying to force myself to eat. Any suggestions? Denis

[PFCareGiver]

Hi

My mom, 85, has IPF and GERD. She started at 130lbs and is now 80 with little appetite. We have maintained above 80lbs but she isn’t hungry and has had gall bladder issues so can’t load her up on fats. Thank the Lord she is still in her home but her quality of life is poor and she sleep a lot.

[DJ]

Try Benecalorie. You can add them to smooties or coffee. Each cup has about 330 calories. I get them on amazon. Also, Quest makes chocolate chip cookies that have 250 calories and are sugar free.

[DJ]

Does anyone know if it’s safe to take gainer shakes? The ones that are over 1000 calories? There are a few that have no sugar in them.

[Shawn S Fahrer]

It may not be the sugar that would be a problem — it’s the caloric content vs nutritional content. Unless you are 1) rather thin NOW and 2) relatively active, I can’t recommend them except as a meal REPLACEMENT once in a while — not daily. Since with IPF, it’s normally hard to exercise, any weight gain may wind up in the places that can lead to cardiovascular problems above and beyond the pulmonary problems. Try not to do it — you’re just better off eating REAL FOOD (even if your days of being “fat” are over)….

[Malcolm]

HI I’ve been on Esbriet for 2 years + now, and my weight was falling a couple of kg per year. I’ve started having desert most nights, something I’ve never done before, and my weight has stabilised.

I also gave myself an unofficial break from Esbriet over Christmas, 3 week taper down, two weeks off completely and 3 week build up to the full dose again, most of my appetite returned to normal, I put on a kilo too.

Cheers Mal

[Darlene Cochran]

Keeping weight on has been a chore. So, I have learned to eat a small meal about every three hours. The Nutritionist with my health plan has given me assistance with calorie dense foods, like dried fruit. That helps. I have also learned to eat by schedule rather than hunger. If it does not taste bad then I will eat it, I cannot wait for good taste buds now. So, I have utilized cream of wheat, oatmeal and other cereals in my diet at least once each day. In addition, I make sure that fruit and veggies are a meal each day. I use proteins in at least two of my meals. Peanut Butter and honey sandwiches are my late evening snacks as is hot fresh cooked pudding, I do not bother with instant. The hot pudding is tasty, and I use nonfat half and half to make it. So far, I am holding my own at about 100 lbs/ I am 5 ft so that works for me. I make split pea/lima beans and ham/ vegetable beef with lentils added/ chicken broth with carrots and orzo or noodles. These soups are a quick warm snack or sometimes my meal. I add cornbread or an English muffin to help out. I use brown sugar for sweetening things and have promised myself that food is essential to health.

[Carolyn Giosia]

I’ve Gained weight and am not happy, I assume its all the bread I have to eat to tolerate the OFEV ugggh. Also lack of energy to exercise I’m just guessing.