Pulmonary Fibrosis News Forums Forums PF Communities OFEV Side Effect reduced!

  • denise-stogdill

    Member
    March 21, 2024 at 2:41 pm

    I don’t like raisins so I don’t think this would be good for me. But I have found a cup of white rice or a cup of applesauce or even a banana before taking my Ofev 150mg does the trick. For some reason, I began suffering with GI side effects continuously during the last 5 months (I’ve been on Ofev since 2021). My PCP offered the above food items as foods I should try and they work! So for those like me that don’t have the taste buds for cinnamon & raisin, alternatives!

  • walterfab

    Member
    March 21, 2024 at 3:02 pm

    I used to have Ofev diarrhea 2 to 3 times a week.

    My Pulmonologist recommended that I start take 2mg loperamide and 10 mg of famotidine before meals. I have been essentially diarrhea-free since I started this new regimen.

  • bruce-f

    Member
    March 22, 2024 at 1:31 pm

    This is a very helpful thread—thanks to everyone for sharing their strategies!

    I am delighted to add Pepperidge Farm’s cinnamon bread to my grocery list. Yummy.

    I also want to share my own magic formula, which is Fairlife milk products. Their whole milk and chocolate milk are lactose-free, enriched with protein, and rich in calories. Fairlife makes 14 oz. protein drinks called Core Power, which do not require refrigeration and make for a good portable snack, but their regular milk products keep in the refrigerator for several months, which I find convenient.

    When I am nauseous and unable to eat a proper meal, as I am much of the time, a glass or two of the chocolate milk can get me through.

    Be aware that it is important to eat or take fiber, as these milk products can cause horrible constipation.

    I am grateful to hear the conversation about fiber in this thread. I am a believer. For what it is worth, my internist suggested using Miralax for chronic constipation, rather than colase or senna.

    I am also intrigued to try some of the other ideas posted here. Yes especially to the boiled potatoes suggested by the poster from Poland! Dziękuję ci bardzo, Glaca! Powodzenia! (I do not speak Polish, but traveled to your wonderful country years ago!)

    All the best, Bruce

  • Bouleversee

    Member
    March 26, 2024 at 12:33 pm

    Do I gather that the side effects, notably diarrhoea, don’t start straight away but only after being on OFEV for quite a while? I haven’t had any side effects yet and was feeling very lucky but I am only taking 100mg initially and only started on Thursday so maybe too soon to draw any conclusions. I wonder how long I will have to stay side-effects free before they move me up to a higher dose.

    • bruce-f

      Member
      March 26, 2024 at 2:43 pm

      Hi there! My own experience with OFEV’s side effects has been variable. After two years of taking the 150 mg dose 2x/day, I have experienced a range of gastrointestinal ailments, and it is hard to know what to expect on any given day.

      I would recommend an experimental approach, and develop a routine of consuming a significant amount of protein each time you take your medicine. I weight about 145 lbs. and make sure I consume at least 25 or so grams of protein at each dose. I have to be careful to consume plenty of fiber along with this protein to avoid constipation.

      Loss of appetite has been my most dramatic ongoing symptom, which has posed a challenge for getting that protein on board in time for each dose of OFEV. I drink a nutrient-dense smoothie in the morning with a dairy-free protein powder (I like Orgain) and about 2T of whole flax seeds), and I rarely have an appetite to eat again until dinner. I eat cannabis a couple of hours before dinner, which helps with nausea and gives me the munchies, and usually have a nice dinner and my second dose of OFEV.

      I have learned to avoid nausea most of the time, and I try to view nausea as a tool that helps me avoid foods that will not be easy to digest. (Nausea and food aversions can be unpredictable and can come on suddenly, and my spouse has been quite saintly about my occasional last-minute decisions to skip a meal, or have a bowl of cereal after we’ve prepared a savory dinner.)

      I keep a Zofran in my pocket and premade protein smoothies in the fridge—often a good go-to if you start feeling depleted but not hungry.

      A very specific note: I have found that Fairlife milk products are an invaluable option for managing protein and caloric intake. Fairlife makes single serving protein shakes called Core Power which are shelf-stable, have 26 grams of protein, and are reasonably appealing to drink. A much more affordable variant for daily use are their refrigerated milks, which importantly are lactose-free, enriched with protein and calories, and can sit in the fridge for several months before opening. I opt for the whole milk and the chocolate, and they taste indistinguishable from regular milk. Take extra fiber and be prepared to use laxatives if you find yourself drinking a lot of this milk. It has been a lifesaver, but—word to the wise.

      I know this long answer may overwhelm you as a long response to a short question. I am glad you were able to begin with the 100s, and hope you have continued success with the OFEV regimen. I am very grateful for this medicine, and after two years on the medicine have not experience any loss of lung function. The adjustments to my diet have been profound, but I love my breakfast smoothies and I am able to enjoy dinner almost every evening. Yay!

      Good luck—keep the conversation going, and enjoy keeping those lungs as healthy with this tricky but effective medicine!



      • bruce-f

        Member
        March 26, 2024 at 2:48 pm

        Hi Bouleveree—

        Haha—I wrote so for so long that I forgot to address your specific question about diarrhea. I have had a bout or two along the way, but as my longer note says the side effects have been much more varied than just diarrhea. I saw that you were a brand-new user of OFEV, and wanted to share some things that would have helped me as I began the medicine. Good luck!!

    • Margo

      Member
      March 28, 2024 at 2:28 pm

      My husband started on OFEV at the end of December and he’s had diarrhea almost every day. I hope that isn’t the case for you. He hasn’t lost or gained any weight. He does think his teeth are starting to loosen up, which he said he’s read losing teeth and hair loss could be side effects. Good luck to you on your journey.

  • Bouleversee

    Member
    March 26, 2024 at 12:37 pm

    I swallow my capsule half way through my meals, by the way.

  • Larry70

    Member
    March 26, 2024 at 5:31 pm

    I started on Ofev 100mg almost a month ago. So far no problems at all. My appetite is normal, I eat pretty much anything, especially very hot spicy foods (have done past 40 years or so) love ghost peppers and Reapers! I eat lots of fruits, yogurt, salads as well as drinking lots of coffee. Nothing yet seems to be a problem.

    I was worried a little that I might also get the diarrhea, loss of appetite and weight loss so I put aside my trying to lose weight (could stand to lose about 10 or 15 lbs) but the scale is going up instead of down! (likely from increased stress-related eating)

    I know this all could change quickly and I could also get the GI upsets but I am very careful about taking the Ofev halfway through my meal and drink lots of fluids with my meal as well (to get the pill to pass through the stomach and into the duodenum more quickly – where, I heard, is less likely to cause problems. I also think the adverse reactions is more individually based – luck of the genetic draw.

  • mita-vyas

    Member
    March 28, 2024 at 1:48 pm

    Hi

    I have been taking Ofev on and off for two+ years. Lots of GI issues and bathroom visits.

    I tried cinnamon bread with raisins. It worked. It is only day 3 but so far so good.

  • Larry70

    Member
    March 29, 2024 at 2:10 pm

    https://www.verywellhealth.com/foods-to-avoid-when-you-have-diarrhea-1944667

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