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

  • OFEV Side Effect reduced!

    Posted by harold-cheatham on October 5, 2023 at 4:33 pm

    I have been on OFEV 300mg daily for 2 1/2 years. I have had a real problem with frequent bathroom visits until two weeks ago. I ate several slices of Raisin Bread with cinnamon one evening for a big snack and my problem vanished. I continue to eat at least 5 slices every evening and I do not need imodium at all. It is amazing! It works for me and might for you.

    Larry70 replied 2 weeks, 6 days ago 30 Members · 44 Replies
  • 44 Replies
  • thomas-hakel

    Member
    October 5, 2023 at 5:50 pm

    My husband was diagnosed with PF , we will be going to the Cleveland Clinic next week. We have heard about the side affects of OFEV, this info might come in handy, thank you!

    • harold-cheatham

      Member
      November 2, 2023 at 10:53 pm

      Pepperidge Farm raisin bread is by far the tastiest and effective brand i preventing bathroom nightmares. I ran out of it and used other brands that were not nearly as effective. Back on it now and I am now at around 5 weeks without incident. Had spicy food for lunch one day….big mistake the next day. I also take one stool softener daily as well as several Kirkland-Costco fiber capsules to prevent constipation. Works!

  • karen-h

    Member
    October 5, 2023 at 6:36 pm

    Thank you Harold! I was on 300 per day for 6 months, reduced to 200 for the last 3 months. It is a very hard decision balancing the benefits of Ofev with the complications of the side effects. Cinnamon bread with raisins will be in my shopping cart. Best wishes, Karen

    • gordon-b-sandmire

      Member
      October 31, 2023 at 6:59 pm

      I’m wondering if cinnamon and raisins in oatmeal would work? I’d like that better.

  • david-bennett

    Member
    October 21, 2023 at 4:22 pm

    Loose bowel movements, frequency, and urgency are common side effects, but not everyone gets them. I had serious issues with 150 BID, and it persisted to a lesser degree with 100 BID. Suddenly, this summer it faded to very infrequent. I haven’t taken Imodium for weeks. My sister has had no problem with Ofev. They can be short term, intermediate, persistent, or absentt. You won’t know until you get started.

  • don-moffett

    Member
    October 24, 2023 at 2:26 pm

    Interesting, I made oatmeal cookies with cinnamon and raisins, and it did the trick for me, I can see where the cinnamon raisin bread would work as well. I cut the white sugar by 2/3 and increased brown sugar by 1/4 cup. I used the Quaker Oats recipe. I eat a couple abd take my OFev and then a third one, and I am good to go. It is all about what works

    • pastordan

      Member
      March 14, 2024 at 9:14 pm

      I’ve been looking for a good oatmeal raisin cookie recipe. Thank you for mentioning Quaker Oats; I will try to find that one. I used to eat too many OR cookies when I could find ready-made cookie 🍪 dough at the grocery stores, but I think those vanished during the pandemic. I kept trying to tell people that anything containing oatmeal and raisins simply had to be a health food, right? I made some from an ad hoc recipe I created myself, through blending several published recipes that I found online, but that was before my multiple spine surgeries, and I am not sure I can tackle a kitchen project like that since IPF found me. Knowing that you found relief from the Ofev urgency gives me fresh motivation to refine my recipe, and maybe replace it. Question: did you include molasses? I don’t think I want to include it in my next attempt. Anyway, thanks again. Peace and blessings to all.

    • Charlene Marshall

      Member
      March 16, 2024 at 8:28 am

      Thank you for sharing Don! I find this so interesting. Love what we discover on this forum!
      Charlene.

  • roger-cummins

    Member
    October 24, 2023 at 2:43 pm

    I’ve been on OFEV for 2 1/2 years and my issues have been on and off. A couple of months ago I started eating one banana every morning and I haven’t had any issues since.

  • ginabena

    Member
    October 24, 2023 at 2:59 pm

    Harold, that is great news. I have a very similar situation. Do you eat your cinnamon raisin bread dry or add butter. I could use some relief as well. I’m willing to try anything after my 21/2 years of running to the bathroom. Thanks

    • david-reno

      Member
      October 24, 2023 at 3:25 pm

      Believe it or not, 1 jelly donut a day does wonders for Me. If I miss it’s to the bathroom.

      • harold-cheatham

        Member
        November 8, 2023 at 11:23 am

        I do not add butter. Let me remind everyone that Pepperidge Farm Raisin bread is FAR more effective and much tastier than the other brands that I tried. It is more moist and dense than typical raisin bread. Still working very well for me with OFEV 300mg per day. I take one daily stool softener along with several of the Costco Kirkland fiber capsules to prevent constipation. I probably take around 4 throughout the day. One stool softener every afternoon. One or two slices of Pepperidge Farm Swirl Cinamon raisin during the day and at least 4 in the very late evening. Not helping the waist line but at this point …who cares! 74 year old male 6’3″ 215 pounds. Pulmonary Fibrosis and emphysema. I use a portable back pack oxygen concentrator when working on our 3 1/2 acre property set at 4. Don’t need it inside or asleep.

  • keith-emery

    Member
    October 24, 2023 at 6:11 pm

    Great to hear of all these remedies to help with the side effects of OFEV. I too have suffered, mainly with nausia and vomitting, but from time to time diarrhea also, frequently both together on the same day. I have discovered that a reasonably substantial breakfast helps me, namely a plate of instant noodles before my pills and ‘hey presto’ no side effects! I have been on OFEV now for 09 months @300 mgs a day. Hope this helps – at least worth a try for some.

  • Charlene Marshall

    Member
    October 24, 2023 at 9:21 pm

    Hi Everyone,

    Whenever I see anything that talks about reducing OFEV side effects, I’m quick to read because I struggled with the GI side effects terribly from OFEV when I started it. In fact I had to titrate up and down on my dose a couple of times before my body would even tolerate it. I am happy to share I found a couple of tricks! First, I always keep *subcutaneous* Imodium on-hand. This is the one that dissolves under the tongue without water. For whatever reason, it works way better for me and almost instantly… far superior to the regular oral Imodium tablet. My mom (a Pharmacist) recommended I try this and it was a game-changer. Second, I have to eat a very protein-filled breakfast with my dose of OFEV or I’ll struggle to tolerate it. My “go-to” easy breakfast that is filled with protein is a simple protein pancake: 1/2 cup of dried oats, 1/2 cup of egg whites and 1 egg, mix well. Heat a pan with some coconut or avocado oil and add the mixture to the pan then flip as it solidifies. I usually top it with a bit of berries, honey, yogurt, etc (make it your own) but this is a substantial amount of protein and I feel the best after eating this and taking OFEV. I hope this is helpful to others!

    Take care,
    Charlene

    • barbara-walter

      Member
      October 31, 2023 at 3:11 pm

      Do you mean sublingual not subcutaneous? Subcutaneous is under the skin and requires a needle. Sublingual is under the tongue. (I’m a nurse) glad it works.

      • Charlene Marshall

        Member
        March 16, 2024 at 8:30 am

        Hi Barbara,

        I was contributing to another thread on this post and saw your reply – absolutely I meant sublingual! So sorry about that error, everyone. I mean the tablet that gets absorbed under your tongue, which is sublingual.
        Take care,
        Charlene.

  • ray-dingman

    Member
    October 25, 2023 at 8:16 am

    Hi I have been on Ofev 150 since 2016 with occasional GI problems. About 6 months ago I started having

    serious problems like having to be near a bathroom after I ate. I am not sure if it is Ofev or some other GI problem. I am wondering if anyone else has had this problem after being on OFEV for years? I have an appointment with GI today to try and rule out other problems.

  • jofac-ohandlin

    Member
    October 25, 2023 at 8:46 am

    Hi Harold, also Ray,

    I have been on OFEV since 2015, over 8 years. Started on the 300 mg daily dose, but after six months due to G.I. problems reduced to 200 per day. I have been on that since, but have always had to work at keeping my GI tract under control, lopermide hydrochloride (Imodium?) as necessary. This post is most timely as for the last few days I have chosen to reduce to just one 100 per day. Today, I attempted return to the 200 mg per day. Problems back immediately. The problems are most awkward when I try to exercise. My mid-morning exercise is 400 metres up and down our cul de sac. Today I got 200 metres in and had to head back to the toilet. Two hours later repeating the exercise and the same again.

    I look forward to trying the cinnamon diet, hope that it works!

    Regards, Joe

  • debbi-rummery

    Member
    October 30, 2023 at 7:49 pm

    I have been on Ofev for 8 years, originally 2 x 150mg daily and now 2 x 100mg daily.

    I have found if I ate breakfast and took Ofev following it I got diarrhoea but if I leave taking it for about 30 mins to give the food time to settle then I have no side effects at all.

    Hope this helps, Debbi

  • barbara-walter

    Member
    October 31, 2023 at 3:14 pm

    I am surprised that you found raisin toast effective in combating GI symptoms. It’s a carb with fiber but what ever works, great.

    • harold-cheatham

      Member
      November 8, 2023 at 11:28 am

      Not toasted! Just right out of the bag. May try it toasted but afraid to vary from something that is so easy and WORKS.

  • thomas-hakel

    Member
    October 31, 2023 at 3:26 pm

    My husband was put on Ofev last week, he has no stomach issues but is so tired. He is on oxygen to use if doing any type of exercise for a few weeks now and was fine walking and while at work. Now he is exhausted, has anyone had this symptom with Ofev?

  • epride

    Member
    October 31, 2023 at 4:27 pm

    I have been on Ofev for 2 years. The first thing my pulmonologist told me was to be sure I took protein with my dosage. That has always worked for me. I’m not sure about the raisin bread, but as someone else said, whatever works. I eat peanut butter toast with my dosage and that works for me. Good luck!

  • Libby

    Member
    October 31, 2023 at 4:37 pm

    I have been on Ofev for 3 1/2 years, mostly 200 mg/day. I tried several times to take the 150 mg tablets but they not only gave me nausea and diarrhea but also raised my blood pressure quite a bit!! So I am staying with 100 mg twice a day and the one saving food/supplement I take regularly is fiber. I take Citrucel or Metamucil (or off-brand equivalents) morning and night. The fiber is essential for me. Also eat oatmeal, farro (a very nutritious grain substitute for rice). Plenty of nuts and seeds and salads too. Peanut butter is great for soothing stomachs and providing a filling snack.

    Good luck and Happy Halloween to everyone!

  • kathy-legere

    Member
    October 31, 2023 at 8:02 pm

    My husband has been taking cinnamon capsules (CinSulin). I give him 2 capsules with his morning Ofev(150mg) and it seems to help.

  • Glaca

    Member
    March 16, 2024 at 7:44 am

    Sorry I’m writing with Google Translator, but I’m from Poland and my English is poor. Since February 2023, due to IPF, I have been on OFEV (2×150mg). After more than a year without side effects, I started having problems. Long-lasting diarrhea. No medications helped. Probiotics in significant doses for a short period of time. And what? I started eating quite large portions of boiled potatoes in lightly salted water. Additionally, lean meat stewed in vegetables and salads with carrots or green peas. After a week of this diet, everything returned to normal. I ask: has anyone tried such a diet? If so, with what effect? Greetings from Poland. – Glaca

  • Charlene Marshall

    Member
    March 16, 2024 at 8:27 am

    Hi Harold,

    That is so interesting, thank you for sharing that information! Many people in our forums community struggle with the side effects of OFEV, so I have no doubt others will find this helpful. I often refer people to the Immodium that is dissolvable, under the tongue, for whatever reason that worked well for me compared to the regular oral tablet. I still had to come off OFEV multiple times and titrate back up on it. Even better if some yummy cinnamon bread fixes the problem – so interesting, thanks for sharing!
    Take care,
    Char.

  • Bouleversee

    Member
    March 19, 2024 at 2:12 pm

    My first prescription of Nintedanib/Ofev (100g twice daily, to be increased later if tolerated) will be arriving tomorrow so it has been very useful reading all your comments. My hospital Pharmacist recommended ginger and the only things I was told to avoid were grapefruit, grapefruit juice and marmalade made with Seville oranges but I see from Boehringer’s literature and comments on this website that various other things, including dairy (of which I consume quite a lot) can cause problems so I may have to switch to oatmilk. There will be more literature delivered with the medication so much to learn and remember, I was diagnosed end 2019 so have had to wait a long time for this medication and my fibrosis has progressed in the interval.

  • sparroweye

    Member
    March 19, 2024 at 7:47 pm

    I did not have any issues with Ofev the first six months. I had to take a round of antibiotics and as soon as I did I began severe diarrhea, which has gone on for about a month now. I’m about ready to call the pulmonologist and tell her I’m gonna quit it for a few weeks to do a hard reset. I will try the tatter diet!

    Thanks

  • martin-denny

    Member
    March 20, 2024 at 3:13 am

    Been on OVID for many years with ther usual side-effects and have found that the effects are reduced by eating hot-cross buns!

    Bring on Easter.

  • martin-denny

    Member
    March 20, 2024 at 3:18 am

    Whoops meant OFEV

  • Bouleversee

    Member
    March 21, 2024 at 9:55 am

    Whoops. I meant 100mg.

    Started Ofev this morning and no ill effects so far except that I feel even more tired than usual but that’s probably just because I got to bed very late. Not enough hours in the day for all I have to do. I skipped my usual laxative last night for obvious reasons but am now wondering whether I should take it. I was told I would get some recommended recipes for when I started Ofev but haven’t come across any in the pack so far. I eat a lot of bananas, often mashed with Greek style yoghurt and honey for breakfast but I think I read that yoghurt is a no-no. Was sorry to read that green tea is also no good. I really must go and have a snooze.

  • MICO

    Member
    March 21, 2024 at 2:12 pm

    OMG, I started OFEV 9/4/23 with constant bowel problems, bad much of the time. I have tried everything including lopermide 4mg am and pm, No results. I read this thread yesterday and I did go to the market and bought Pepperidge Farm Cinammon Raisin swirl. This am I had my first near normal bowel movement. It was amazing ! I will now see what tomorrow brings but I have my fingers crossed, thanks to the post on the Cinammon Raisin Bread.

    Mico

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