- This topic has 14 replies, 11 voices, and was last updated 3 years ago by Charlene Marshall.
April 27, 2020 at 8:15 pm #24155William ScottParticipant
Has any one had problems with milk? I tried having cereal and milk for breakfast a couple of times. Both times I experienced diarrhea and upset stomach. If you have and found a good substitute for the milk, please tell me.
April 28, 2020 at 9:27 am #24157Mike MsesParticipant
Initially there were many things that upset my stomach. For the past 10 months or more I have had on most days cereal with skim milk and bananas with no side affects. I take the Ofev after the cereal and then have a piece of toast or a donut afterward. Taking Ofev in the middle of a meal is important. Has to be a full meal for me. Probably my choice for breakfast because I to tolerate the Ofev better with it. For a while I also did yogurt to keep the belly calm. My side effects were so bad last Fall that my Dr put me on 100mg instead of 150mg. This month I going back to the 150mg dose, and I hope that I do not develop any ill effects from it. I believe it is a lot of trial and error with everybody to see what works for you. Hope this helps. Mike
April 28, 2020 at 9:38 am #24159John KaneParticipant
I have been on Ofev for 6 months, 150 mg twice a day. Five days a week I have oatmeal made with milk and have not had any issues. The other days I have an omelette, or some eggs.
I haven’t noticed any taste changes, or loss of appetite.
Yogurt was ok but left me feeling hungry, even with fruit.
April 28, 2020 at 9:53 am #24156Rachel NoreneParticipant
My husband has been taking OFEV for 1.5 years, and was diagnosed 4 years ago with IPF. For the first 3.5 years of our PFF testing (every 3 to 6 months) there was a slow, steady decline in his PFF stats. Over a 6 month period we now have the PFF tests leveling out with no decline. He had terrible gastro side effects, causing him to cut back on OFEV several times…..sometimes dairy, fatty meats, eating out would result in tremendous gas and diarrhea. What has helped him tremendously is getting off the dairy (he changed to Almond milk) and lactose free cream cheese, lactose free sour cream. An even bigger help was introducing a little bit of pickled foods each day (sauerkraut, pickles) and a pro-biotic from the refridge — BIO-K+ — the non dairy version (made with either soy or rice) — finally he no longer suffers with these diets changes. Hoping it might help you as well.
April 28, 2020 at 10:30 am #24165Karen StennesParticipant
I also had a lot of trouble drinking milk or using it on cereal since taking Ofev. I switched to Lactose free milk and don’t get the nausea anymore. Hope this helps.
April 30, 2020 at 9:53 am #24184Karen MartinParticipant
Hi, William. I am on Esbriet, the other PF drug, and also had trouble with milk when I first began taking it. I agree with the suggestions of trying yogurt for a while to see if it will help. It was also suggested to me that I have some protein like eggs or peanut butter with my breakfast to help offset the difficulties with milk. They both seemed to help and within a few weeks I found there was no longer a problem. I wish you luck with this. It is wonderful to have the possibility of slowing this disease despite any drawbacks to the treatment. Karen
April 30, 2020 at 2:08 pm #24193Duncan FowlerParticipant
I am on 150 mg OFEV 2X daily. I usually have milk with my meals. I never noticed that this was a problem.
Yes I have had diarrhea on occasion but I have never associated it with my OFEV.
April 30, 2020 at 4:22 pm #24195Bonnie J SmithParticipant
I had always used yogurt for IBS and had it under control eating it daily. So when diagnosed with IPF and put on OFEV I had a terrible time with my gut. I then started eating a full container of yogurt with each pill and got diarrhea under control, only taking minimal Immodium, 1/2 tablet as needed. When the Covid 19 outbreak occurred, I had trouble finding yogurt, I had to start only using half of a container with each pill….it did not work. I now went back to a whole container and doing better. I use Greek Yogurt which is higher in protein.
May 1, 2020 at 9:13 pm #24212
Thanks so much for starting this thread, I was curious to read through all the replies and see what others say as I’ve often wondered about how my body tolerates milk. I am on OFEV also and typically try to reduce the dairy I’m on as I don’t need any other reason for upset stomach/GI issues but I can’t really decipher if I have an intolerance to dairy or not. For now, just to avoid things all together, I’ve switched to an organic soy milk and have been enjoying it.Not sure if this is something you’d be willing to try? Goodluck!
May 1, 2020 at 10:27 pm #24215William ScottParticipant
Hi everyone. I had cereal for breakfast with lactose-free milk. It seemed a little sweeter than normal, but not objectionable. I have had no problems except for a little gas. Hopefully this solves my problem. If not, I’ll give Charlene’s recommendation of soy milk try.
May 2, 2020 at 12:18 pm #24223
Great to hear Scotty!
I also find the milk substitutes are a little sweeter, including the soy milk I try but not intolerable. I’m glad it seemed a bit easier on your stomach and hope this continues for you 🙂
May 5, 2020 at 1:38 pm #24256Gregory DixonParticipant
I just began taing Ofev three weeks ago and so far have not had diarrhea or other gastrointestinal issues. I do drink a lot of milk but usually it is the A2 variety that researchers say is easier to digest. Perhaps that is a good choice with Ofev.
May 5, 2020 at 2:23 pm #24258Bob RawlinsParticipant
I take OFEV 2x a day 150 mg
No issues with milk or any foods really.
but taking it with or right after eating has limited some of the nausea feeling I get once in a while.
my first tests after being on it 6 months is in June
Anxious to see if there is any slow down, feel the same
May 5, 2020 at 6:06 pm #24262
Thanks so much for sharing Greg! I’ll keep my fingers crossed that the lack of side effects continue for you throughout the course of using Ofev. Goodluck 🙂
May 5, 2020 at 6:08 pm #24263
Thanks so much for writing to us and sharing your thoughts on this topic – glad you aren’t having any issue with specific foods or drink while on Ofev, that is excellent to hear. I agree with you re: taking the medication with food, or right after as well, helps with the nausea. Goodluck with your appointment in June, keep us posted if you can. Charlene!
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