Pulmonary Fibrosis News Forums Forums Treatments and Science On Ofev for nine months and had no stomach issues. Now having diarrhea constant

  • On Ofev for nine months and had no stomach issues. Now having diarrhea constant

    Posted by KTB on May 21, 2024 at 6:51 pm

    Has anyone else experienced a similar situation? Had no problems at all for the first nine months on Ofev. Now, because of the nonstop diarrhea, I’m scared to leave the house and it’s becoming unbearable. Any medications, tips, over the counter meds, food ideas, or anything else imaginable you can think of that could help would be appreciated.

    Ellen replied 2 weeks, 2 days ago 17 Members · 17 Replies
  • 17 Replies
  • sha

    Member
    June 19, 2024 at 7:03 pm

    i have no idea why but several people say they eat raisin bread . They did not dwell on how much or when except for one gentleman. He said Pepperidge Farm 1 to 3 slices usually in the evening. I have Gastric Esophageal Reflux (GERDS) coupled with newly developed allergies to dairy and gluten ( all brought on with the 2 diseases) Therefore i have not attempted the raisin bread.

  • Mohamed

    Member
    June 20, 2024 at 9:15 am

    HI KTB I am on OFEV 150mg twice a day, after not being able to tolerate Esbriet. Initially on OFEV had no problems but a few months later ?6 months started having gastric upset and diarrhea or very loose stools. No foods have helped or made diarrhea worse. If the stools get too watery or very frequent, I take 2mg of Lopramide and it controls the diarrhea for a few days 4-7 days. Alternately you may be able to with the consent of your Doc. To reduce the OFEV dose to 100mg twice a day.

    Good luck.

  • schroeder

    Member
    June 20, 2024 at 9:28 am

    I have been on OFEV for 2 1/2 years. My dosage was reduced to the 100mg twice a day and that helped quite a bit. I also drink the BOOST drinks with protein 1/2 of one drink with each pill and that also helps.

  • Carmen Quintas

    Member
    June 20, 2024 at 2:46 pm

    Hi,

    The exact same thing happened to me.I was on OFEV 150mg, and exactly 9 months after being on it. I started to have severe stomach/diarrhea issues, where I too was scared to leave the house. They reduced the OFev to 100mg. I make sure to have a lot of protein in the am before I take my morning dose.I have a high protein drink.I add 1 cup of almond milk, apple and banana . I originally used whey protein, but my acupuncturist told me to stay away from the whey. It’s dairy. I now use a vegetarian protein powder. I drink 1 cup of this, eat 1 hard boiled egg, and a piece of raisin bread , which someone on this site suggested.I take the OFev with a cooled down cup of chamomile tea.Chamomile is soothing to the stomach.

    I take 1/2 of an Imodium before leaving the house.If I go out in the afternoon I might take another 1/2, depending on where I’m going. I also eat basmati rice, or a potatoe, or mashed quezaba(Caribbean vegetable) with every meal. The starch seems to help.

    I am not 100% fine, but a great improvement over how I was .I also of course make sure, as much as I can to know where the bathrooms are located when I am out.

    I wish you luck, and truly hope it improves for you. I know the anxiety it causes.

    Lastly,see if you can figure out some of the worse culprits. For me it took me awhile to realize tomatoes were a trigger. I think it’s the acidity.I only will eat it if I know I’m not going out.

  • Schutt

    Member
    June 20, 2024 at 3:50 pm

    To all

    I have been on OFEV 2 years

    For over 14 months I complained to the lung transplant group about the intestinal torture I was having as a side affect. I told friends, etc that it was like having a colonoscopy prep every day! Dr Nathan at Inova Fairfax suggested to try “CAROB”

    It is a cooking, dry chocolate powder. Looks like Coaco powder.

    You can get it from Amazon or Whole Foods

    This changed my life! Per Dr Nathan I mix 1/2-3/4 tsp in any form of milk

    Ka’Chava is a great probiotic/vitamin to also add in.

    You have to start slowly so you do not become constipated

    Simple answer to a miserable problem.

    Live life better!!

  • CArol Madara

    Member
    June 20, 2024 at 7:22 pm

    My doctor put me on Questran packets which really help limit diarrhea. I take a packet every day, sometimes two a day if diarrhea is bad. You have to be careful that you don’t take more than that because then you have to deal with constipation.

    But that is the only thing that works for me.

  • John K. Grubb

    Member
    June 20, 2024 at 11:24 pm

    I have been of OFEV for 2 years. I have found that stomach problems change about every 6 months. I have developed a routine that works for me.

    About 30 minutes before I take OFEV I take either 1/2 or 1 Imodium, depending how I am doing. Of course this is constipating, so most mornings I have a small bowl of oatmeal.

    I also always have 2 Imodium tablets with me at all times.

  • Dave

    Member
    June 21, 2024 at 8:10 am

    As you can see different things work for different people. Although not as extreme as your case, I too had a delayed diarrhea response, about 4 months after starting OFEV 150 mg. What ultimately worked for me was taking 1 tab of immodium every other day on a regular basis, along with a daily probiotic (Naturelle). I still get occasional “ breakthroughs” of diarrhea, and if bothersome I skip a dose or 2 of OFEV to “reset” my system. Doing this Ive been able to stay at 150 mg for over 4 years now.

  • Sandyman

    Member
    June 25, 2024 at 2:58 pm

    I am very interested in the Carob you were recommended by Doctor Nathan. He has excellent credentials. How long have you used it and how many doses do you take a day? I just read another article about Carob and how it is doing for IPF patients in Spain. It appears to be working well. Also read about someone else taking it that is a Veterinarian. If anyone else is taking it please chime in.

    I have been on OFEV since Oct 2023. I have had sever bowel issues since the beginning and recently reduced my dosage to 100mg twice daily. I am doing well about 50 percent of the time now. I would like to try this Carob but would like to hear some more comments. Thanks and stay strong all.

  • Rick

    Member
    June 25, 2024 at 3:30 pm

    I was good for almost 3 years, never even used Imodium. Infact I had constipation problems. Then hen going on special pre colonoscopy diet, fiery surgery I started having diarrhea. This went on nd off for. Few months. I finally took two tablets of Imodium, that’s it only two, one time , and I’m normal stools gain.🤷‍♂️

  • CharlesDee

    Member
    June 26, 2024 at 1:17 pm

    Hi KTB

    I’m into my 7th month of taking Ofev at 150mg twice per day and stomach discomfort and diarrhea have become a constant as of late. I’ve been treating it with pepto bismol, liquid and tablets for when on-the-go. But then I’m constipated for two days. Imodium stops diarrhea but will not alleviate stomach discomfort. Pepto works for both, for me. I try to eat a balanced breakfast and lunch and keep dinners light. Can’t really speak too much on that as I am new to navigating these symptoms. That Carob powder mentioned here does peak my interest.

  • MICO

    Member
    June 26, 2024 at 1:26 pm

    I was on OFEV for 8 months with the worst diarrhea and was taking up to 4 loperamide 2x a day with no relief, I couldnt go anyplace ! My Primary Care Dr sent me to a GI doctor and they did stool samples. The results came back that I had severe pancreatic insufficiency, test results <21 Elastase and abnormal Lactoferrin. GI wanted me to start another drug but I declined and was sure it was caused by the OFEV, MY Pulmonologist took me off OFEV and then a month past and I had CT scan of abdomen and Pelvis along with new Elastase and Lactoferrin, TOTAL IMPROVEMENT, The OFEV was my problem.

    So I recommend that you see a GI Doctor and have these tests and if not good results, talk to Pulmonologist about removing OFEV and then repeat the GI tests.

    I have bee good without the OFEV, wish I could continue but no if causing damage to my pancrease.

    I am also on a Tyvaso Trial but feel it is placebo so far

    Best of Luck

  • billrussell

    Member
    June 27, 2024 at 3:00 pm

    I have been on ofev for over a,year

    had diarrhea for a Long time. eventually found the Kellogg raison bran in the morning stopped it very quickly. interesting that some people seem to have luck with raisin bread. I wonder if it’s the raisins.???

  • Diggerdon

    Member
    June 27, 2024 at 11:12 pm

    Similar to my experience. I started at 150 mg Ofev twice daily. Doctor eventually reduced dosage to 100 mg twice daily which helped but not totally, Another doctor had noted I had little pancreatic enzymes on annual blood test. After better part of the year investigating, I found that Ofev induce pancreatitis. Stomach pains, bloating, diarrhea, etc. Prescribed Creon with every meal. After experimenting with dosage, largely gone with no other side effects from new drug. Check it out. 🙂

    Don D

  • Diggerdon

    Member
    June 27, 2024 at 11:18 pm

    I need to check out the Raisin Bran cereal which I really like. I’d rather have a non-drug solution to managing GI issues than taking another drug to manage side effects. If Raisin Bran doesn’t work, I’ll be content to continue with the Creon treatment….

    Don D

  • Meredith

    Member
    July 2, 2024 at 9:47 am

    I had terrible results with Ofev . I finally stopped after deciding that I’d rather have good quality of life during a shorter period of time. I switched to Esbriet a few months later and have had very few issues. It’s been 3.5 years.

    The two best known prescriptions cause side effects Esbriet has been gentler for me. I’m 81 years old. Before IPF I was more active generally.

    I’m doing the best I can to feel good most of the time.

    Do what works for you but don’t expect a cure

  • Ellen

    Member
    July 4, 2024 at 3:05 pm

    My pulmonologist recommends always eat protein before taking Ofev. I have been on Ofev for 2 years. My doctor started me off with 100 mg 1 x day for 3 days a week. We gradually added 1x day all the way up to 7 days over a period of 3 months then slowly added another tablet and I now take 100 mg 2 x day. Women seem to do better with 100 mg rather than the 150 mg. Someone mentioned about Medicare not paying for Ofev. My doctor gave me an application for financial assistance. I go through Boehringer-ingelheim (sp) . There are many companies that fund these expensive drugs. You will need to provide your financial info, tax returns, medical info. It would cost me $2,800. Per month otherwise. I hope this might help someone on here. Ellen

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