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Serious Side effects of OFEV
Has anyone experience a perforated bowel from taking Ofev?
Just out of hospital with diagnoses of perforated bowel and was told to stop taking Ofev as it could have well been the cause!
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19 Replies
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Sorry to read about your situation with Ofev and perforated bowel, sounds dreaful – I hope you recover well and will be able to tolerate Esbriet. I was curious so I asked ChatGPT about this –
this is what it said,Gastrointestinal perforation, or a tear in the stomach or intestinal wall, is a rare but serious side effect associated with Ofev (nintedanib). In clinical trials for idiopathic pulmonary fibrosis (IPF), this event was reported in less than 1% of patients treated with Ofev, with no cases observed in the placebo group. In studies involving chronic fibrosing interstitial lung diseases (ILDs) with a progressive phenotype, no instances of gastrointestinal perforation were reported in any treatment groups.
Due to the potential severity of this side effect, it’s crucial for patients to be aware of symptoms such as severe abdominal pain or swelling. Individuals with a history of abdominal surgery, diverticular disease, or those taking medications like corticosteroids or nonsteroidal anti-inflammatory drugs (NSAIDs) may have an increased risk.
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Sorry to hear about your situation. I have a gastroenterologist that I meet with to discuss any gastrointestinal side effects I have had with OFED. She has been incredibly helpful, I think we to often rely on our pulmonologist to be our go to person for all ailments. They base their gastro advice on other patient feedback, seminars and sales persons. She has helped me choose the right fossa to pair with Ofev to minimize my gastro reactions, and what a difference. She is at the university along with my pulmonary doctor and they work as a team with IPF patients.
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Thank you for sharing your experience. Please explain what you mean by “fossa”.
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Sorry, typo, choose the right protein, a slow digesting protein such as poultry breast meat, nut butter, etc, because OFEV is slow digesting.
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I would be interested in whatregimen you are on!
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When my husband first started taking the drug he got violently sick throwing up. I did research and found an individual taking espirate needs protein with each meal. Found out later, that he had not eaten a good breakfast.
We have made a point of including protein whether it be from meat, beans , protein bars, or protein drinks; it has worked very well for him. In addition one of the best things that he was advised by his gastroenterologist was first thing in the morning 30 minutes before eating you take 40 mg protonics. And in the evening you take 40 mg Pepcid .
But the entire point of this post is to make sure you include protein in your meal
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I have had a diverticulitis attack for the last several weeks and am just now able to eat a soft diet instead of liquid diet. Went off Ofev immediately after CT scan showed the condition. Have had one previous attack in September 2020 and was hospitalized then. This time I didn’t go to the hospital because my husband is blind and I managed it at home with diet and and antibiotics. I’ve been on Ofev since July this year. Not sure what I should do and having trouble contacting my doc’s Ofev coordinator. I’m getting better, but scared of a future perforation. Will reach out tomorrow to doctor and insist on advice.
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I have IPF, diagnosed 2013 and I was on OFEV from 2017 to 2022. I also have diverticulitis attacks and was not told that you should not take it with that condition. Had a lot of attacks over the years while taking it and in the beginning had to drop from 150 to 100 dose. Still had constant issues. Finally stopped taking OFEV after last attack in 2022 and feel so much better, no attacks since. My IPF is still the same levels and my oxygen still at 4 ltrs.
Just wanted to make you aware to check this out.
Peg
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I take pirfenidone for IPF, the generic for Esbriet. About 2 months after starting it last year I had a severely perforated colon from diverticulitis that required removal of 20% of my colon and a colostomy. I’ve since had the colostomy taken down and surgeons tell me a full colonoscopy shows my remaining colon is in excellent health.
I’d not connected the pirfenidone to that event as I’d had diverticulitis in prior years. But now I’m wondering….
I’ll be interested in anything you learn about the connection. I hope you are now doing well.
Sally in AZ
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I also had diverticulosis when I started taking OFEV over 7 years ago. None of my doctors told me that it was not a good idea to take it with that issue already happening. Changed to the 100 after bowel issues about a year in and that was better, but over the years had several diverticulosis attacks and still doctor never said to stop the OFEV. Even in my research I never saw anything about this issue. Anyway I finally decided to stop the OFEV and have been fine ever since and IPF has remained stable and it’s been 2 years since I stopped. My fault for putting up with it for so long. I just wonder how much the pulmo doctors actually know about our daily issues living with IPF – none that I’ve ever talked with seem to be familiar with much. I’ve learned more from forums like this than with doctors.
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So I am on the 6am and 6pm OFEV medication times. For my morning dose I have a 3oz chicken breast or thigh and a tablespoon of potatoes (baked or mashed), I prepare 3 days worth at a time. I take my OFEV 1/2 way through the meal with a full glass of water. At the 6pm I just make sure I have a slow digesting protein (chicken, lean red meat, lean pork). The gastroenterologist said OFEV, as well as other meds taken 12 hours apart are slow digesting, and because of OFEVs tendency to cause gastrointestinal problems, I need to match a slow digesting protein with it to minimize the impact. So I tried it and I have been primarily (80-85%) problem free. A great deal better. And I stay away from things that OFEF taught me it does not like – caffeine, alcohol, lots of sweets and oily foods.
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Hi, I am new to IPF. I was diagnosed in June 2024 and I started Ofev in late Aug 2024. For 3 months I didn’t have any side effects, now diarrhea is an occational occurence so far. I take the medication as presctibed and like some mentioned I avoid foods that Ofev doesn’t like.
During my appointment with the respirologist in Dec 2024 I asked again what my diagnosis was, doctor’s reply “challanging”, so not sure. I asked the question because I don’t have any IPF symptoms and lead a normal life incluidng regular exercise and the last CT Scan was stable and my breathing test was normal.
I don’t know what to make of all this. I would appreciate any comments/information from anybody that has been diagnosed and has no sysmptoms or had no sysmptoms at the time of diagnosis but later on developed symptoms
Keep well. Thanks
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HI
I started out the same way 4 yrs ago. At 3 yrs. I started o2 at night. now I need it for longer walks, stairs, can still go without for around the house stuff. OFEV is ongoing battle, I can do 100mg2x a day for about 10 days then switch 1x a day for 3or 4 days. Then start all over again. The diarrhea gets bad for about 2 days. I get dehydrated that causes low BP. Now is the time to get as strong as You can, it will make a lot of diff. in the long term. Good luck and God Bless.
David
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Hi, in 2019 during a different test, they identified scarring in my lungs. Went to pulmonologist, he called ILD then. Continued to see him but with a gap during covid. Everything stayed the same. I was living in Colorado and had no trouble breathing or doing anything. In March of 2023, saw pulmonologist and got the same, stayed the same, check up. Somewhere between March 2023 and September 2023 “something” happened that caused the scarring to worsen. No one knows what that something was.
In september 2023 I developed serious breathing difficulties. Went to new pulmonologist, got on oxygen 24/7, did extensive testing, everything but a biopsy, they still weren’t sure what to even call it so the doc lumped it with IPF.
January 2024, we moved to Arizona where I could breath without added oxygen in the daytime. But after a few months I needed oxygen to do anything active. That is where I am now in 2025. On OFEV 150 mg 2 x day as of Dec 2023, bad diarrhea so I take loperamide.
I’ve read others saying they have gone off OFEV and not had issues with systems worsening and I would love to go off it. But since I don’t even know why my condition worsened in 2023, I’m concerned it could happen again.
I did finally have a biopsy in September 2024, and all I got out of it was a diagnosis of NSIP, which is pretty useless. Nothing changed as far as my meds or treatment. And they still have no idea where I got it, why, or what made it worse.
Good luck to you, hope some of this helps you.
Scherry
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Thanks David
I really appreciate the information from your experience.
A couple of questions
– What do you mean by get strong now?
– What triggered your diagnosis?
Nick
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After taking OFEV, I experienced a perforated bowel. First indication was a great deal of digestive tract pain and then I developed sepsis. Once the sepsis was under control I had a colonectomy. My pulmonologist prescribed OFEV saying it might extend my life by 1 to 2 years. The remedy and full recovery from the perforated bowel took 1 1/2 years including 2 weeks in the hospital and massive amounts of antibiotics.
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I was diagnosed with ipf a year ago and prescribed ofev. All was fine until October last year when I had a stroke. I was immediately taken off Ofev as apparently stroke is a rare side effect. I was put on pirfenidone but I am experiencing a rash which has covered the upper part of my body. It is really itchy and the spots are changing to brown pigmentation. It is really affecting my quality of life. Has anyone else experienced this.
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BIO’s fibroneer should be available in a feew months. I believe it has many fewer, and non-dangerous, side effects.
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My doctor thought this drug would be available by last Christmas, then changed that expectation to spring. Now I am concerned that fda cutbacks may delay this again, although I have no knowledge of that happening. Have you heard anything about where this drug is at in the pipeline? I read that it is “expected” to be submitted to the fda for approval, but I can’t find anything that says it actually has been submitted yet. My doctor spoke to the manufacturer’s rep and the rep seemed equally unaware of the timeline.
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