-
Ofev
I started on Ofev May 2021 and have had constant diarrhea. The first of March I started to have blood in my stool. Has anyone else had this problem?
-
12 Replies
-
Side effects are the nemesis of the “go to” meds. that are offered in the Pharma world. IPF is (to date) incurable so you have to be your own advocate. When I was diagnosed with IPF five years ago, all of the literature and conversations I had with the “professionals” were all offering two “pharma” choices. Digging deeper I came across some alternative two options. These were Naka Serrapeptase and Nattokinase supplements that are a viable option with no side effects you are experiencing with Pharma prescribed medications.
IPF is currently fatal. No cures yet, to date. I’m into my fifth year after diagnosis. Regular follow-up and it is still progressing but I’m not impacted by “side effects”, medications as bad if not worse than IPF itself. IPF is fatal at this time. Make your choices that reduce the pain and suffering on your journey.
My opinion.
-
I have been on Ofev150mg 2X daily since Oct 2022. Diarrhea was a constant problem, even when taking up to 6 immodium a day. Spicy, fatty foods and raw veggies made it worse. My Dr. finally prescribed Tincture of Opium, said it will resolve any diarrhea issue. I picked it up but never used. Amazingly the diarrhea suddenly got better and is not a problem in my life anymore. The Ofev website said the diarrhea eventually gets better. I guess that is what happened to me. I will say Ofev is the gold standard and it works. I have had 3 CT scans since Spring 2023 and the scarring has not progressed at all. I have quarterly PFTs and my last PFT was the best ever – it was after 32 sessions of Pulmonary Rehab – which I highly recommend. I wish you the best.
-
Hi Mack!
I have been taking Ofev for about a year and a half. I have been plagued with diarrhea since I started it. It saps my energy, depresses me, and has pretty much turned me into a recluse. I have tried suggestion I have read about and nothing works reliably.
I never feel like going anywhere – even if the diarrhea would allow it. Even for a doctor’s appointment, I have to quit taking the Ofev the night before and the next morning. And 9 times out of 10, I still end up having to take Imodium.
I have terrible pain in my stomach and gut area and stay afraid something is going to erupt and burst because I’ve always had digestive issues and bouts of diverticulitis off and on.
Right now, I have been off of it for a week and actually feel better – mentally and physically. Still trying to make up my mind if living a little longer with all of the side effects is worth it at all. It’s not much of a life to look forward to, sadly.
But, then again, I read about people that have been on Ofev for years with no problems. I think it’s like a roll of the dice and one never knows unless they try it.
I guess I pretty much have the same opinion as @Gerry Banford
-
I have been on OFEV for about 3 years now. Started at 150 mg twice a day and experienced the same symptoms as you. Switched to 100 mg for the morning dose which improved it somewhat. What has really turned it around for me is 2mg tabs of loperamide (generic Imodium) , one tab first thing in the morning and one tab at night, in combination with a healthy (2 heaping tsp) of Metamucil before breakfast. It does not get me back to my pre OFEV life but it is definitely more manageable. Good Luck!
-
I had very similar reaction when I first started. After I had blood in my stool, I was referred to a gastro-enterologist. He did a colonoscopy and endoscopy and found no abnormalities. So he prescribed the medication Budesonide three 3mg capsules per day and that along with two Imodium tablets per day (over the counter) has really kept things at bay. Budesonide is a steroid but I am told is absorbed in the gut and does not have the side effects that most steroids have. I still get diarrhea every now and then but not constant like it was. You’ll probably be referred to a gastro-enterologist anyway so you might want to ask about that.
-
I started taking OFEV 150 mg for my IPF in April 2019. It did cause diarrhea which made it barely bearable and restricted my activities. There was a suggestion to take it with protein to offset the issues. After the first six months I started thickly spreading peanut butter on two pieces of bread before I took my morning and evening doses. This really helped the situation (as did a good hamburger) and gradually the issue improved to the point that I went back on the 150mg with no problems(as long as I still took it with peanut butter or hamburger). I no longer have a problem taking my OFEV. Interestingly, I participated in the first study at UCD that evaluated the benefit of taking green tea capsules that evaluated “Reversal of TGFB1-Driven Profibrotic State in Patients with Pulmonary Fibrosis” and was published in the New England Journal of Medicine on March 11, 2020. It is available online. As the study says “The empirical correlation between the reduction in collagen 1 protein and phosphorylated SMAD3 levels was positive….” So I have added Green Tea Extract 1000 mg to my diet each day before I go to bed. It is readily available online or through Amazon. I have also added Swanson “Lung Essentials” 500mg every day. My last three years of PFT tests have indicated a very slight decline in lung function. Obviously everyone is different but I strongly recommend adding Green Tea to your diets. It provides a proven benefit. If you are worried about the carbs by taking the peanut butter with bread I would advise just using a table spoon to eat it. I hope this works for you. Good luck.
-
On OFEV 300 daily for 3 years now. Diarrhea was us occurring up to 6 times daily. Cinammon raisin bread helped and after a 6 month period was no longer helpful. I take 200 mg of Ibuprofen nightly to ease joint pain. I have a serious knee issue and doc started me on a mega dose 2400 mg daily. Way too much and got a rash. Now I am taking at least 600mg ibuprofen daily and no poop issues. male 75 knees are shot and implant has to be replaced. Just the tip of the iceberg folks. Sad situation….
-
There is another choice. Esbiret. I have been on the generic version for 2 years 3 caps 3 times a day. No diarrhea. A little loss of appetite and a little upset stomach at times. I get it at the va for $8.00 a month. (A Real a blessing) I seem to be stable.
-
Ofev dosage makes a difference. 2×150/day is typical, but my doctor dropped it to 1×100/day after 6 months of diarrhea and weight loss. That plus taking 50-100gms of whey protein concentrate ( all-whey, no flavors) which is the basis for ‘energy drinks). One or the other or both together fixed the problem. The last PFT showed the rate of decline in FCV had doubled, so the Ofev was increased to 2×100/day and am handling well so far.
Good luck.
-
At age 85, I started Ofev Sept 2022, 2-150s/day, and experienced constant diarrhea that started at bedtime with follow-on occurrences during the night. Daytime occurrences were more limited. My weekly experience seemed to be a minor constipation for two days followed by 2 – 3 days of serious diarrhea. When I had an urge, I’d take two Imodium tabs as instructed on the bottle, and then one more for each additional occurrence. I had to wear Depends pull-ups at night to avoid bed sheet problems, going through 3 or more pairs a week. After two years I made the following changes which have completely solved the problem… but it might have just solved itself as some have said it gets better with time. For breakfast I eat oat bran with a little cinnamon. I started eating two bananas/day, breakfast & dinner… I think this was helpful. For snack, I eat a little “trail mix” (mixed nuts and raisins.) Further, I changed Imodium. The bottle says to take two tabs upon first occurrence of the day… but I figured the Ofev was a 24 hour constant cause of diarrhea, so I should have constant Imodium in the body to fight it. So I now take 1/2 a tablet 3 times/day… noon, 5:00pm, bedtime… much less Imodium/day than I was taking before, but more constant within the body.. After I initiated diet & Imodium changes, there was no sudden diarrhea resolution. But now, two months after starting with above changes, I have no diarrhea; bowl movements back to normal with normal stools. But my IPF symptoms seem to be getting worse during this period, so I’m wondering if not only the side effects have diminished, but have the primary purposes of Ofev also diminished due to bananas or other changes. I don’t get DLCO tests for 2 more months. I know this doesn’t help much, but perhaps similar diet & Imodium changes along with more time, might be helpful.
ezstreet
-
My experience (in 2020 when I started on Ofev) was that I could not tolerate the 150 mg dose.. it made me feel like I had the flu… absolutely awful. I am a small woman, under 130 lbs. Fortunately I switched to a physician at the U of MN who does a lot of research and she assured me that many smaller-in-size patients cannot tolerate the 150. After that switch to 100 mg twice/day my gut has improved dramatically.
For me, the most important factor is FIBER. I take 2 capsules in the morning of Methylcellulose ( I buy a generic brand on Amazon) and 2 capsules after dinner of Psyllium fiber. It’s a lot of fiber but I have very few problems with diarrhea anymore. I’m sure I could take 4 capsules of one type of fiber, but now I’m afraid to “choose sides”…everything is going along ok so I’m sticking with this routine.
When diarrhea does occur (usually when we travel) I take a Saccharomyces capsule.. It is a yeast-based probiotic that goes a long way toward getting your GI tract back in balance. This is one very reliable brand: Pure Therapro Rx on Amazon … other good brands are NOW brand or Jarrow. My husband had Cdiff 10 years ago and started on Saccharomyces, the only product that really helped with the diarrhea. .. it is a valuable ingredient in our supplement “tool chest”.
Good luck to everyone…enjoy the Spring!
-
When they say take OFEV with protein, they mean it. I take 150 mg twice a day and was a on the verge of discontinuing it. Then I tried a plant based protein drink at breakfast (along with my Cheerios and OFEV). I eliminated coffee and caffeinated tea and onions and peppers in my salads and made sure that my dinner included a lot of protein. It seems that protein buffers the irritating effect of OFEV on your intestines. Cereal does not.
What a difference! I can now tolerate OFEV.
However I began to have real problems with flatulence. Then, I tried having lactose free milk with my breakfast and the flatulence went away. Never had a lactose intolerance before but it is easy to deal with.
Log in to reply.