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OFEV and dietary Do’s and Don’ts: suggestions please!
My 88 year old husband will soon start taking OFEV … with great trepidation.
Seems like he can expect some unpleasant side effects. And it appears his diet will need to be modified including an increase in slow-digesting proteins, especially when pills are taken.
I’ve read a lot. However we are most interested in the experiences of other IPF patients who take OFEV. Are there certain proteins, foods that are particularly helpful? Does anyone use supplemental protein drinks?
Are dairy products problematic? What about milk products like cottage cheese, soft/hard cheeses, yogurts?
Thanks to all for any suggestions, tips!
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13 Replies
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For me, the key things have been to recognise that no single thing works – you can go along for weeks or months with no problems, and then suddenly nothing makes any difference and the diarrhoea starts – and to realise that if it’s really bad then taking a few days break is the best way to reset the situation. Ki haven’t found that any “magic bullet” foods stay magic for long. The closest I’ve come to that is with cottage cheese – which quickly becomes boring!
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I don’t know if age can be a factor with how likely your husband will experience side effects but the GI side effects seems to vary quite a bit depending on the person. The first several months I took Ofev (100mg) I hardly had any problems except for some constipation (which I’ve always been prone to) fairly easily solved with increased water, fruit, fiber and occasionally take senna tea or senekot tablet.
However, I didn’t want to keep taking the lower dose of 100mg so I asked my pulmonologist to increase to 150mg. Eventually I started getting the diarrhea, at first it was just once a day every so often but over time (a few months) I now get it more frequently and is more of a problem. I haven’t yet given up on the 150mg but that time may come.
I’ve been very careful about what I eat – following the suggestions of 12 hours apart, eat with lots of protein, even protein drinks (before and after – taking it halfway into the meal) I’ve tried to limit most all the things that might trigger the diarrhea but I have yet to find the magic answer. For me, it seems like it has a mind of its own and it doesn’t seem to matter what I eat. Sometimes I get the diarrhea in the middle of the night – well after I’ve eaten anything. The one thing that has helped me some is to take about 4 or 5 capsules of Metamucil (Kirkland equivalent) and if it gets really bad I’ll take an Imodium tablet (1/2) I need to be very care with the Imodium as I can get seriously bound up if not careful.
People may suggest all kinds of foods and such that work for them to deal with this but I suspect you’ll have to go through some kind of trial and error. You may get lucky and have no problems at all.
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Hi Sue, let me begin by saying this has been MY EXPERIENCE so qualified as such. I’m 68, diagnosed 18 months ago and have been on Pirfenidone (esbriet) since last March. I too had the same questions and concerns. I was cautious and insured I had eaten protein, even just tablespoons of peanut butter and went slow on dairy and acidic foods. To date I’ve had absolutely no side effects. Not with food, not with Sun….nothing. The only adjustment I made as I developed a bit of phlegm was to add Pepcid 20 mg twice a day which helped. I now ( knock wood) eat what I want and do as I please. No adjustments due to the meds. I’m perhaps lucky but I had the same concerns starting the med which caused unnecessary anxiety. Here’s hoping your husband has the same result. I hope this helps.
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Hi Kip
My doctor has just put me on Pirfenidone. He told me about the side effect. Glad you are having no big problem. All the info you can give will be helpful
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FYI Mark Cuban’s Cost Plus is a great source for the medication at a fraction of the price of other suppliers. https://www.costplusdrugs.com/
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I am 85, on OFEV for 2.5 years. My current formula is no coffee, peppers, onion. Try to stay low fat. <font face=”inherit”>Have a good protein breakfast. Protein with the pill is a MUST. With 150 dose at breakfast I eat one hard boiled egg, plus cereal and fruit with decaf tea. Some use a protein drink. Lactose </font>free milk<font face=”inherit”> is a good idea with cereal.</font>
Lunch is a simple sandwich or soup.
<font face=”inherit”>Dinner always needs protein (with the 150 pill). </font>Chicken,<font face=”inherit”> fish, pork, with cooked veggies and a starch.</font>
<font face=”inherit”>I have </font>hummus on a cracker before dinner as an appetizer and a cookie and pretzels for desert.
Prepare to have some of the worst smelling gastric gas. A side effect of OFEV they don’t publicize.
Everyone is different, so experiment and read the directions you get when starting OFEV.
<font face=”inherit”>Good luck with it. The fact that you are reaching out for </font>information<font face=”inherit”> is a good sign that you </font>will<font face=”inherit”> succeed.</font>
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OFEV side effects are well documented. To manage the diarrhea I had when I first started taking OFEV I found that using a lot of peanut butter(not reduced fat variety) on two slices of toast in the a.m. was very helpful. I did have to cut back from the 150mg capsules for one year but once things were under control I went back to the full dose. In the evening I try to always have chicken, turkey, or beef with my meal. It is not a perfect solution but I would give it a B+. I did not have good luck with protein powders.
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I am 78 years old and 4 years into IPF. Ofev has never caused diarrhea for me, but I’ve struggled with reflux, bloating, gas and extreme nausea. I have stopped and restarted Ofev periodically, but the same symptoms returned with each restart. I take 100 mg 2 x a day and have experienced a slow progression of the disease. Recently, through this forum, a contributor recommended taking the meds with a protein drink. It’s been working well for me for about a month now. I get out of bed and immediately take a pill with a few gulps of a plant-based protein drink and do the same after dinner. I’m sure many protein drinks would work, but the one I personally use is Owyn which I find at Target and many grocery stores. Owyn stands for “only what you need” and is high in protein. When I was experiencing nausea, I found that ginger chews helped immensely.
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I started taking my OFEV with 2oz of chocolate ensure high protein drink. I also have gone off milk and am doing almond milk hoping this helps. I have been on ofev for a 15mos. but i am also on mycophenolate and pantoprazole for gerd and take them with the ensure. some days are better than others. always have immodium fast acting on hand. good luck on your journey.
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I’ve been on OFEV 100 for almost 3 years. My go-to breakfast is cooked oatmeal in microwave. Half the way through, add half a cup of OIKOS 17 gram protein vanilla yogurt with a cup of frozen blueberries and cherries. Continue the microwaving to ensure the berries are cooked. Between that and giving up alcohol, I’ve managed to tolerate OFEV very well. Good luck!
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I’ve been taking OFEV since 07/24
I tolerated pretty well then I started having diarrhea and sometimes I would throw up on this formem Someone said to drink premier protein I’ve been doing that every morning and every evening I have not had diarrhea anymore nor have I threw up… The protein is also been helping me because of weight loss, And one time I weighed 248 then because of a virus and some cancer under my neck and went down to 203 for two years this morning I weigh 167
I feel OK but that protein drink will help me maintain some weight I think the OFEV Contributed to my weight loss
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Hi @SueB
This is a great question and something a lot of people with IPF look for answers on. OFEV can be a tough drug to manage due to unpleasant side effects; however, I’ve also heard a lot of patients tolerating it well. For me, a couple things were super helpful that I wanted to share:
1) I took OFEV with meals and usually ate half a meal, then took the pill, and ate the other half. I found taking OFEV with a meal high in protein helpful and I do really like supplemental protein shakes; however, the plant-based ones versus dairy worked better for me.
2) I kept sublingual (that is important!) Imodium nearby at all times. Regular Imodium may work too but my pharmacist recommended sublingual and I found it worked way better and faster.
3) Before I could tolerate OFEV ongoing – at a dose of 150mg twice daily – I ended up having to stop it to give my system a “reset” a couple times, and then slowly titrating back up to my prescribed dose. I think I actually had to do this 2 or 3x before I tolerated it for good. If this happens, please don’t get discouraged! I just wanted to share that it might occur for him. I hope these tips are helpful.
Charlene.
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What seems to be working for me is a breakfast of wholewheat porridge oats which I add a few blueberries and walnuts to. Made with water, eaten at 9am then I take my first dose of OFEV. I have developed IBS which mainly seems to be triggered by concentrated dairy products like cheese, cream and ice cream, also spicy foods which includes chilli or other peppers so I avoid all of those. I find rice is a good staple for evening meals. Before my evening dose of OFEV although not hungry I eat a handful of un-salted peanuts. So far it seems to do the trick, that’s about 12 months into taking OFEV.
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