OFEV and milk

[mike-mses]

William

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

 

[John Kane]

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.

[Rachel Norene]

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.

[Karen Stennes]

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.

[Karen Martin]

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

[Duncan Fowler]

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.

Dunc

[Bonnie J Smith]

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.

 

[Charlene Marshall]

@scotty

Hi William,

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!
Charlene.

[William Scott]

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.

Scotty

[Charlene Marshall]

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 🙂
Take care,
Charlene.

[Gregory Dixon]

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.

[Bob Rawlins]

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

 

 

[Charlene Marshall]

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 🙂
Charlene.

[Charlene Marshall]

Hi Bob,

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!

[tieflies]

Milk thing seems possibly related for me. Still conducting field tests (😁) focusing largely on oatmeal, not granola. My OFEV regiment at 150 per capsule is:

AM – before eating, Loperamide and Pepcid, other regular meds

AM – after eating, about an hour – OFEV embedded in roughly a tablespoon of smooth peanut butter. I make a bolus of these and gulp it down without chewing or water.

PM – <b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>before eating, Loperamide and Pepcid

PM – after eating more or less at bedtime, same OFEV / PB bolus.

Skippy smooth, BTW. Too lazy to stir Teddy’s etc. In fact, I use the Skippy squeeze pouches – they are easily portable.

Seems to significantly mitigate diarrhea.

[schroeder]

I initially had problems with regular milk. I then switched to Almond milk with no further issues.