Ofev – diarrhea after some time?

[Phil Maas]

I started on OFEV nearly 5 years ago. For the first 4 to 5 months everything was fine, then I started having diarrhea and it hasn’t let up since. Sorry to be the bearer of bad news. However, not everyone reacts the same way, so perhaps it will abate soon.

Phil

[Larry70]

I’ve been on Ofev for 6 months now and have only experienced constipation that I’ve kept under control. Recently, when the dose was increased to 150mg, I started to get occasional diarrhea, but so far only when I’ve eaten something that was problematic in some way. I worry a little that I need to be more careful with what I eat. (don’t go overboard with wacky smoothie ingredients and go easier on the ghost peppers…) Hopefully, I will avoid any future problems but even if I do – I’d rather put up with diarrhea for a time with the hope that it will eventually subside. I’d rather not take Esberiet.

[i4n]

May I ask what made you think Ofev is not working for him? Are his test results (PFT, HRCT) worse than before taking Ofev?

[Keith]

I started on ofev in July, 2023, by February, 2024 the diarrhea was so bad that Loparamide and diet weren’t helping. Cut back to 1x 150/day and guts settled down.

In June, 2024 went to 100mg x twice daily and within a month was back to the diarrhea so bad that experienced fecal incontinence while asleep in the middle of the night. Pulmonologist has applied to switch me to esbriet so have not been on meds for 2 weeks and guts are almost normal. Time will tell. Everyone’s body reacts differently and there is no set path for all.

[Steve Dragoo]

I tried Ofev but almost immediately had diarrhea that was uncontrollable and stopped but I want to try it again lower dose so I can slow this disease some.

[Sandyman]

Diagnosed IPF in October 23. On Ofev 150mg x2, I had severe diarrhea every day and one time 9 times in a day. I tried the raisin bread,Carob and Imodium twice a day. Nothing came close to helping. Around the middle of June I asked my Doctor to put me on 100 mg instead of the 150mg. She did, and within a week I have had normal GI functions. YEA!!!. I had my third CT Scan several weeks ago and had no increase in scaring. I intend to stay on the 100mg up to my next CT Scan. If the results are not good, I will go back to the 150mg dose and live with the problem. They did find a nodal on my right lung increased in size some and I go for a PET Scan tomorrow. Prayers accepted. Things have been so good for me on the 100mg.

[Raymond White]

After starting on Ofev 150mg tablets twice daily I went for about three months without any side effects. Then weight loss and diarrhoea set in. While the initial onslaught was a little disturbing, over the last three years it been little more than a nuisance that is quickly controlled with a couple of loperamide tablets.

[julian]

I was on Ofev for about 6 months and bounced between diarrhea and constipation constantly. I mostly daily used Miralax for the constipation and Metamucil for the diarrhea (sounds strange, but that’s the way it works with me) and other stronger laxatives and anta-diarrheals as needed. The Ofev appeared to improve my lungs as seen in CT scan and breathing tests, but I periodically experienced excruciating abdominal pain that would last and leave me incapacitated continuously for 2 to 3 days. 6 months ago the doc switched me to Perfinidone/Esbreit. That too causes diarrhea and constipation, but not as severe and easier to control. Unfortunately, it does not appear to work as well as the Ofev and I may have to go back on Ofev.

[walterfab]

Julian

I suffered with Ofev-induced diarrhea for over three years before my new pulmonology PA suggested that I take 2 mg loperamide and 10 mg famotidine before breakfast and dinner. Since starting that regimen, I haven’t had diarrhea all year. It has made a big improvement in my quality of life.

Walter

[chuckgalloway]

I started out on Ofev 150mg 2x in July of 2023. No diarrhea for the first 10 months no matter what I ate as long as there was some protein. Then it started in June once or twice a week no matter what I ate. Loperamide clears it right up. Still trying to zero in on what is triggering it. Thought it might be dairy, hot peppers, tomatoes, or spicy food since I had an episode after each. But it doesn’t happen every time so still haven’t hit it. Maybe I just need more protein.

I also noticed some stomach discomfort around lunch time if I don’t eat anything. Don’t always have an appetite but even crackers helps.

[ekim]

I started OFEV may 2024 diarrhea was bad at first. The special pharmacy called before shipping and asked about diarrhea. They asked how it took it and I replied before my meal and told me to eat half my meal take it then finish meal. With that and taking imodium in the morning no problems.

The problem I have is taking it 10 to 12 hours apart and eating with it.

[chuckgalloway]

I arranged to eat at 6:30am and 6:30 pm. I don’t like most breakfast food anymore – just got tired of eggs and sausage. Still like bacon so that is every morning along with peanut butter for more protein. Dinner is easier.

[DMoffett]

I changed doctors recently and am on a trial. One of the senior physicians on the trial was talking with me and I mentioned the diarrhea issue with OFEV. He indicated that I needed to eat at least 3 oz of protein with OFEV, he said that the med breaks down slowly and I needed to have a protein that also broke down slowly. He suggested lean bland poultry (baked, broiled, steamed or boiled). I started that a month ago and have not had the problem since. Now If I have diarrhea it is usually self induced, spicy food, chocolate, dairy, are my hot buttons.

[Larry70]

I always eat lots of protein with both my AM and PM 150mg dose – however doesn’t seem to stop the GI problems. But, maybe it would be even worse without my generous portions of protein. For a few months after first starting Ofev, I mainly had constipation with 100mg but when it was increased to 150 I started having diarrhea regularly but usually only once or maybe twice a day – mostly about 2 hours or less after the morning dose. I didn’t take anything for it as it was only once a day and I didn’t want to risk constipation. Recently I had an early appointment and took the Imodium – I must be unusually sensitive to it as I had terrible constipation that gave me horrific hemorrhoids. I’ve pretty much decided to just live with the diarrhea as best I can.

[Rod Branham]

Mine happens on and off. It usually doesn’t last very long then I am back to normal. Still haven’t figured out what the trigger is and I have been on it for 2 years now

[Keith Emery]

After about 18 months of taking Ofev, I have suddenly developed what I call ‘NINJA Diaherra Attacks’, often triggered by the need to pass urine. Fortunately, but not always I am in the bathroom at the time. My diet is good with lots of protein and always some fibre. However, it still happens and often takes me by surprise as I do not experience any warning signals. I am reluctant to take loperamide regularly and only do so as a last resort.

I try to live with it but it is becoming difficult and often embarrassing. I have also lost considerable weight, I was 14 stone 9 lbs when I started on Ofev, and now I weigh in at 12 stone 7 lbs – I am not complaining about that though! I attend two fitness classes a week, walk at least a mile a day with my dog each day and I stay fit and active. I am 77 years of age.

I have contacted the manufacturer of Ofev for advice, but they could only register my enquiry as a report of the side effects and offered no suggestions. I understand, though realistically, that Ofev is prolonging my life, and I am extremely grateful to the NHS in Britain for prescribing Ofev. Thanks!

Keith

[Packman]

I’ve been on OFEV FOR 3 years. It’s working. Mild progression of my IPF for the most part.

Yes, I got hit with diarrhea pretty badly two years into it. I started taking half of an Imodium 2mg tablet (1mg) with my OFEV in the middle of morning and evening meal. It stopped the diarrhea.

Hope this might help others it works for me good luck to all

[Larry70]

good suggestion, I’m going to try that. Also, taking a fiber supplement like Metamucil capsules might help as well.

[Charlene Marshall]

Hi All –

Diahrrea can be such a terrible side effect of OFEV. For some, I’ve heard it impacts their quality of life so negatively, they opt not to take it. I struggled with this side effect in the beginning to and had to go up/down on dosing several times before I could tolerate it. One thing that helped immensely was the Imodium *sublingual* tablets – not the oral tablets. My Mom is a pharmacist and she recommended this to me and it made such a difference, now I can tolerate the 150mg dose and rarely have issues. This sublingual tablet dissolves under the tongue without water so you can take it anywhere and seems to work a lot faster (and better) for me. For those struggling with this side effect, this may be worth a try for you. Good luck!

Char.

[pastordan]

Advance apologies for the length of this reply. I’m a retired preacher, so I’m not real good at brevity.

I think I can ditto parts of nearly every reply in this thread. In January 2024, I started Ofev 150mg x2/day, and the diarrhea started the very next day. No, really.

Loperamide helped a little, but I still wasn’t confident about being able to resume driving a van full of elementary school students from their several schools to an after-school program. After a few days of being able to relate to the 9x/day in the bathroom, and feeling increasingly weakened, I stopped working and briefly stopped Ofev.

Another member of the household then had a positive Covid test, so I also took one and also got the plus sign. So, I went through a course of Paxlovid, and I was then advised to get back on the Ofev as soon as possible. Once I did, the diarrhea was just as bad. I attempted to adjust my diet, but that was more challenging than I thought it would be. I was soon switched to the 100mg. 2x/day, and I was better, but still not great. Not even good, really. Consulting with nurses, doctors, you fine friends, and even again with Dr. Google, I went down to one 100mg/day while I tried to learn/internalize more dietary tips. I had pretty good luck with that routine, taking one capsule per day with my largest meal. That detail eliminated the 12-hour spacing problem, too. After a bit, I bumped it up to the 150s, but still once a day. My pulmonary doc liked my plan to keep stepping up toward the full dose, so I’m now taking one 100mg capsule twice per day.

Well, it only works when I am very strict with myself regarding my diet. Gotta have protein with each dose, and preferably the type that’s slower to move on down the system, like meats, and full portions. A protein shake is helpful, but inadequate by iself. Helps to take the pill in the middle of the meal or soon after, too. I’m not yet confident that I should change one dose or the other up again, but that’s my plan. It’s a journey, and it’s been a somewhat bumpy road.

Tired of all the interruptions (here at home), so I will just say that I hope something in here is somehow somewhat helpful to someone. Au revoir.

[chuckwagon]

I would like to add my system for coping with diarhea and OFEV.

I use immodium at times and when it starts be become a more severe problem : I stop OFEV for two or 3 days and I take a drug (Budesonide)(3 mg) (3 pills of 3 mg) for those 2 or 3 days. This takes care of the bowl inflammation. Then I am back to normal. If not I repeat and stay on Budesonide for 3 or 4 days .

I have had IPF for over 10 years now. I truly understand the complications with the side effects.