Ofev issues

[KTB]

My dad is on Ofev. He had trouble with it for about the first couple weeks, but now has no issues with it. His stomach does fine. So, I would try to just stick with it and maybe your stomach will adjust. I know he said during those first couple weeks he thought he wasn’t going to make it.

[Meredith]

Few people mention the more tolerable Esbriet. It is an antifibrotic just like Ofev. It’s now generic. Its generic name is pirfenidone and my insurance includes it as a generic like all the others.

The OTC cost used to be $70000 a month. My insurance covered that but I still had a high copay.

It is very effective, fewer side effects, now with a lower cost.

Ask your pulmonologist!

[KTB]

Thanks, but his doctor will only let him take Ofev.

[Sandyman]

So glad your Dad is doing better. I understand about how he initially felt. It is really disheartening . I’m hanging in and hoping my problem takes a permanent vacation. I wish your dad many years ahead. Sandy

[Brian]

Sorry to hear about your problem. Certainly dropping back to 100mg twice daily should be considered. Always take Ofev in the middle of a meal. Since you are having an unusually high and persistent side effect, you should try a more aggressive dietary intervention. Not just dairy, try eliminating all processed foods and animal products with their saturated fat and inflammatory compounds. Also eliminate plant based saturated fats from coconut and palm oils. Even healthy fats like olive oil should be consumed only with a generous amount of vegetables, legumes and grains. Give it two weeks of strict adherence before you decide if its working or not.

[Jonathan Poland]

I have been on OFEV for over 7 months now (2x 150mg). When I started, I followed the manufacturer’s recommendation to get at least 20 gm of protein w/ each pill. To do that, I was taking the pill with a protein shake that (unfortunately) was dairy based. And I’m mildly lactose intolerant. I discovered that the protein shake was causing me as much trouble as the OFEV! As it happened, I needed an unrelated medical procedure at the end of month 3 and decided to take a 10 day holiday from OFEV. That gave my gut time to heal before I restarted OFEV. When I restarted, I made a few diet changes, partly at the recommendation of a nurse with the Boehringer Ingelheim “Open Doors” program. I now take protein + carbs with the OFEV. Specifically: at breakfast, 2 pieces of toast, and 1 egg, and a non-dairy protein shake, and in the evening, another non-dairy protein shake plus a banana.

Taking OFEV without the 20 gm of protein is a bad idea. Also having the carbs has really helped me. My “bad OFEV” days are down to less than 1 per 2 weeks. During the first 3 months, I was losing a pound per week. On my current diet, I’m only losing a pound per month. I’m OK with that.

Another downside with OFEV for me is that I can’t tolerate onions – they are guaranteed to give me diarrhea. I have to be very careful about the onions – especially dining at restaurants. Everyone is different, but look to make those kind of changes with your diet too.

The non-dairy protein shake I drink is called “Evolve” and can be found on Amazon (at least in the US).

– jon

[Donald Salzberg MD]

Hi Sandyman. I agree with Briano about asking your doctor to try 100mg 2x a day and then work back to the 150 2x/day if possible. I have been on OFEV for 5 1/2 years and I still have my days. No question talking the OFEV with or soon after a meal is advisable. I take Zofran (8 mg) when I take the OFEV b/o accompanying nausea. Your body does typically acclimate but not always. I love the protein shakes for the fiber benefits too. Eating lighter meals helps me as I’m often bloated and a heavy meal causes my breathing to be less comfortable. Sometimes if the diarrhea is really acting up I will “take a holiday” and just take one 150 mg tablet, but all your physician that.

Don Salzberg MD

[Glenn Fredericks]

I’ve posted this before, but I, with my doctor’s support, have an “interruption” in OFEV for 2-3 days when the side effects have me really worn down. I get benefits and returned strength way beyond the 2-3 days off. At this point, I’m doing that about 6 times a year, every other month. So my net OFEV intake is much higher than if I go to 100 dose all the time. Not suggesting what anyone else should do, of course. I’ll look into Evolve, thanks for the suggestion above.

[Barbara Linker]

I am also 79 and on oxygen 24/7. I’ve been on OFEV 100mg/2x for 3+ months. I’ve only had diarrhea 3 times… most likely from eating fried foods which I have learned to stay away from. I also take my OFEV half way through a meal that has protein. In the evening I take it with either a protein shake and saltine crackers or yogurt and saltine crackers.

[Terri]

I’ve been on Ofev for 7 months. I started at 150 twice a day, but after almost having a diarrhea accident at the dentist’s office, my doctor agreed to reduce me to 100 twice a day, and my diarrhea stopped. I’m also on an immunosuppressant that causes soft and frequent BMs, but I’m having fewer of those now that my Ofev dose has been reduced. I always take it with fat and protein and low/no fiber. For breakfast, I eat a bowl of Special K (low in fiber), chopped walnuts, a few dried berries, and lactose-free whole milk OR eggs. Lunch is usually cheese and crackers (the dairy is cheese doesn’t bother me) OR eggs if I didn’t have any for breakfast, and dinner is usually high-protein with carbs. I don’t eat much meat.

[Ellen]

My pulmonologist recommends eating some type of protein with every dose of Ofev. I also backed off of the 150 x 2. I take 100 x 2 daily. The 150 x 2 is especially troublesome for women. I would consult with your pulmonologist about the dosage. I eat peanut butter toast with my dosage and have no diarrhea issues. Best of luck!

[billydee]

I was on Ofev for 10 most. the diarrhea was really bad so my dr. recommended Esbriet which I been on for year and no more diarrhea and seems to work fine

[Bill]

I have been on Ofev 150 starting my 5th year. I am using Imodium and I also take Metamucil twice a day for firmer movements. Over time I have developed a schedule for visiting the bathroom needs. Seems to be working pretty good for me.

[Martie]

I have been on OFEV for 3 months with 150 X 2 daily. I was quite concerned about taking this as I also have diverticulitis. So, in the am I take tablet with a bowl of oatmeal and a slice of raisin bread toast and in evening after dinner with a couple oatmeal cookies and this has resulted in no problems at this point Best of luck! Karl

[John Kane]

I have been on OFEV 150 mgs for 4 1/2 years now. It took me a few months to figure out what I could and could not eat/drink with this medicine.

I followed the instructions but found the biggest diarrhea culprit to be coffee. I have up coffee for over a year, switching to green tea instead. Now I have a coffee from time to time but with a lot of milk.

I also found that anything sour or tart or acidic caused me considerable GI grief. Dairy does not bother me, nor does Spicey or fried foods.

I eat either oatmeal ( the kind you cook) or eggs and toast for breakfast to get something substantial down there before the morning pill.

[Paul75]

I had the same problems and switched to 100 mg in the morning and 150 mg in the evening along with 1/2 ammonium with each dose. Not perfect but certainly better and doable. I am 75 and have been on the drug almost 2 years now.

[Ellen Macko]

Hi! I switched to 100 mg…it really helped yet the diarrhea continued. I always take with protein halfway through the meal. But fairly recently I began taking only Ofev with the meal and any other pills including vitamins an hour later. This in addition to the rest has really made a difference. All the best to you!

[Brian Dickinson]

I have been on Esbriet for about 6.5 years now. I have been lucky in not having side effects. If your doctor will only prescribe Ofev, maybe a different doctor would be more accommodating. I don’t understand the reason he/she is unwilling for you to try Esbriet. If reasons are medically sound then soldiering through with Ofev may be best path. Good luck with you journey.

[Sandyman]

Thank you to everyone. The suggestions are much appreciated.

I had an appointment with my doctor yesterday. She has no problem with me taking the 100 x2. What I plan on doing is to stay with the 150×2 until I get my next CT scan in a month. I will know better when I find out what my progression is from my original diagnosis CT. I believe I can live with my persistent problem until my Scan. I believe the 150×2 is most effective. Depending on my progression I am hopeful I can then switch to the lesser dose. Until then I can alter a few things and hope the problem will lessen. Thank you all again for the kind words and encouragement 💖

[Sandyman]

Well my GI issues got worse and I decided to take 5 days off of Ofev. This is without my Dr. Knowledge and I don’t recommend this to anyone. I will tell her at our next appointment.

NO issues for the reset period. Felt great and renewed. Now back on Ofev 150×2 after a week and GI issues have not been nearly as bad. I’m glad I did this as I felt I really needed it. The week was worth anything negative that I may have caused myself. Again, if you care about the consequences don’t do anything like this without your physicians blessings. Just my experience 😀

[Cece]

Sometimes you need a different pathway than Imodium. With my doctor’s approval, I tried lomitol, and it worked brilliantly. I changed to Esbriet when I was on the galapgos clinical trial (ofev and the Galapagos drug were horrible for my gastrointestinal issues).

[Ray Dingman]

You may want to try a fiber supplement. I use Bene fiber 2 teaspoons 3 times a day. I have been on Ofev 150 x 2 since 2016.

[Diggerdon]

I am 75 and have on Ofev since 2017. Within 6 weeks or so of beginning Ofev full strength (150 mg 2X) I began having excessive GI problems. An annual blood test showed I had low pancreatic enzymes caused by pancreatitis. I had a CT, endoscopy and dietary changes with no results. After much online & phone research, I finally found a single blog saying Ofev caused pancreatitis (CVS & Boehringer had nothing to offer on this). My pulmonologist cut the Ofev to 100 mg 2x, and my GP prescribed Creon DR for pancreatic enzymes. I continue with both now, and my GI problems are minimal. I am careful with fatty and fried foods as well for extra GI insurance.

[Marjolein]

Hello, I found this Australian OFEV flyer that does mention pancreatitis. Our GP added this to my husbands blood-test in december and I noticed some values where higher than they were supposed to be. Thank you for posting this, it gives my detective work an extra direction for the side effects my husband had.

https://www.nps.org.au/assets/medicines/193f52e8-0e32-45a1-8634-a5620080a313.pdf

nps.org.au

Page not found - NPS MedicineWise

Page not found - NPS MedicineWise

[Bouleversee]

I am 87 and in the UK where if you had IPF you had to wait until your fibrosis had progressed to a certain level before getting treatment. Although that rule was changed in Nov. 2022 and in theory IPF qualify as soon as diagnosed, supposed to be implemented from March 23, I have only just been seen by the ILD team and now qualify under the old rule, which is rather annoying! I still don’t have a start date but in view of the possible side effects, I am to be started on 100mg twice a day to see how well I tolerate it, which seems sensible. I have been given a large pack of info regarding how to take it, including recipes, which I hope to read tonight and It is very useful reading all your posts about your personal experiences. I hadn’t realised that dairy was a no-no so will see what the instructions say about that. It will be a big blow if I have to give it up as I consume a lot of it. I’m hoping there is a certain amount of latitude and it’s different from person to person.. I’ve lost an awful lot of weight in the past year as cooking for one is somewhat restrictive and I don’t have much appetite so hope the recipes are tasty.

My oxygen levels have also deteriorated while waiting for treatment but I really couldn’t function on my own here carting heavy oxygen supplies around so will carry on as long as possible without. I’m not breathless when at rest but quickly become so when I hurry around in the house or get stressed. I’ll just have to pace myself.

Bouleversee

[Sandyman]

I think the actual recommended dose for Ofev is 150mg X2. Many are using the 100mgX2 for various reasons. Personally, I would ask to be put on the 150mg as I believe it is the recommended dose by the mfg. This higher dose should work more in your favor to stop progression of IPF. If you develop the possible side effects and you can’t handle it then you could go to the 100MG.

I am on 150mg now and have constant GI issues and my Doctor has agreed to put me on the 100mg. If it doesn’t help my issues I am going back the 150mg. If the 100mg helps, at least I have had about 5 months worth of the 150mg. I am not a Doctor and my methodology is my own. Best of luck to you and please post your results for the forum. Sandyman

[Cu]

Can someone please explain to me why so many are taking this drug (or the other one) when: it causes so many horrible side effects, costs a fortune, has only a 50% chance of stopping lung decline, are newly diagnosed with no symptoms, in fact really healthy other than a diagnosis? Why aren’t these f-ing drug companies researching ways to CURE IPF rather than provide a maintenance drug that lines thier pockets indefinitely? The answer is obvious! We don’t need to be sheep who follow thier (and doctors who accept company payoffs) advice to take such a poor excuse of a drug! Let’s fight for a cure, rather than accept this snake oil. I won’t be taking this drug no matter what!

[Meredith]

Ofev made me very sick and I had excellent support. I would not allow myself to continue a medicine that they thought might help. Several nurses and an Ofev rep suggested peanut butter. Result: I get nauseous from just smelling peanuts. My Dr switched me to pirfenidone, generic for Esbriet.. my symptoms are so much better.

If you have a hard time breathing ask for oxygen therapy. IT WORKS. Explore medications, diets, to help you feel better.. you are not going to find a cure by yourself. Do your best to feel good.

If your doctor is not a good fit, find one who is. Remember there is no cure. Look for ways t feel better. I feel better after ice cream. You might not. There are those who think ice cream is awful.

Find what makes you feel better

[Charlene Marshall]

Thank you so much for sharing this @Meredith ! I know a lot of patients struggle with the side effects of OFEV, including myself and are always interested in hearing others’ experience. Esbriet seems to help some people, and its another approved medication for IPF :). You’re right, advocating for the right doctor and other interventions that might help us are so important. Thanks for sharing.
Char.