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What I do to have almost no ofev side effects.
Started 100 mg. of ofev two times per day in Oct 2024 and have had very few problems. Am going into quite a bit of detail and hope this will be helpful:
Was told to eat a bland diet that included 25 grams of protein in each meal before I took the medication. Counted protein grams very strictly and ate only ‘white’ items, i.e. white rice, white bread, etc. Very little fiber ie. whole grains, fresh fruit, and veggies. While my stool was loose, I did not have problems with diarrhea, nausea, etc. I then gradually introduced foods I normally ate,starting with canned fruit and vegetables and found that I could eat pretty much what I wanted. Then started eating fresh fruits and veggies. The first fresh apple I ate was luscious!! after not eating them for weeks (I normally eat one every day) This process was very difficult for me as I’m very health conscious with my diet and normally ate whole grains, and a lot of fresh fruit and veggies and very little meat. Also ate a lot of gluten free foods. I eat a lot of soy products (soy milk, tofu, tempeh) and as much organic food as I can find. I also do not eat anything with added sugar and avoid food with much salt and rarely add salt to my meals. This process of gradually adding foods to my diet took weeks and was very anxiety provoking because of my dietary health concerns, but it is helpful and informative.
Also good to add to any meal: slice of bread or toast (mine average 4-5 gms of protein/ slice) 1-2 Tablespoons of organic peanut butter or almond butter with no sugar or other additives. (Butters have 4-5 gms/tablespoon) Also eat cheese, cottage cheese, bean pasta, such as red lentil penne.
Typical breakfast:
1 cup fresh or frozen fruit
1 c. unsweetened soy milk, heaping tablespoon each of almonds, sprouted pumpkin seeds, sunflower seeds, walnuts, hemp seeds, and ground flax. ¼ c. low fat yogurt.
Gluten free cereal, i. e. Mesa Sunrise or steel cut oatmeal.
Plant- sourced protein powder to make up rest of protein requirement.
Alternatives:
Whole grain or sprouted grain toast, hard boiled or scrambled egg, protein shake. Or a smoothie with frozen fruit, yogurt, nuts and protein powder.
A piece of toast and tablespoon of almond or peanut butter will give 8-10 gms of protein. Sometimes I just eat a Tablespoon of nutbutter.
For lunch I eat whatever I want.
I tried to test the lower limit of protein, but find I do better closer to 25 gms. One time I ate what I estimated to be 18 gms. Soon after, I started to feel nauseous and a little while later I vomited. (not a pleasant experience and scary because I didn’t know how bad it would be.)
I have loose stools, but not diarrhea and at ‘normal’ times of day. I have had diarrhea a couple of times, but only as a one-time incident and not limiting to my activities.
I still have a hard time on this regimen- sometimes I eat more than I want to get enough protein- sometimes I’m not even hungry and force myself to eat. And the 10-12 hour interval is difficult for me to follow. Also, the ofev makes me tired which I find hard to deal with as I’m a very active person. On the other hand. I don’t want to lose any more lung function so I’m sticking with it for a while longer. My liver function tests are good.
I encourage folks to read labels; there’s an awful lot of unnecessary junk in food and who knows what will interact with our medication.
I hope this information will be helpful to some of you and I wish everyone the best.
I’ll check the forum weekly to see if anyone has questions or comments.
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1 Reply
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Sometimes I think that managing OFEV is quite personal and a bit of trial and error. No one told me I should cut out fiber or whole grains so I now take two fiber capsules a day and have a delicious breakfast of half a cup of oats, a cup of water, about 1/3 cup of OIKOS vanilla 17g protein, and a cup of frozen cherries and berries. Mix it all together and put in the microwave for 3 minutes, stirring once after a minute or so. This recipe is very forgiving, so experiment!! I have had zero adverse gastro impact and have been on OFEV, now 100 mg twice a day for over 2 years. Let the group know if it works for you.
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