What side effects did you have with Ofev (nintedanib) for IPF?

Posted by robtlhughes @robtlhughes, Sep 2 7:47am

My IPF is mild, for now, but I'll start Olev next week. How long before I'll experience side effects? I read that "sublingual immodium" works better than the pills, but where do you get it? I don't see it on the Immodium web site. Are adult diapers a realistic option for getting out of the house? Thanks.

@robtlhughes, allow me to tag a few IPF members who have experience with Ofev (nintedanib) like @robinson @ligreen @kpeace @fracturedd @sassyboots @DennisAJ. I'm hoping they can share more about their experiences and answer your questions about bowel-related side effects, imodium, and potential need for adult diapers.

Here's a link to Imodium's Canadian website with info on the quick dissolve, sublingual tablet https://www.imodium.ca/products/imodium-quick-dissolve I didn't see it on the US site either.

REPLY

I’ve been on ofev for 3 years. First 6 months was ok. I’ve had severe diarrhea ever since. It’s debilitating. Imodium helps sometimes. I mostly stay close to home.

REPLY

Has anyone with IPF had Covid?

REPLY
@sassyboots

Has anyone with IPF had Covid?

Jump to this post

Did you contract COVID, @sassyboots?

REPLY

I'm 79, have IPF and Gerd and will finish my first month of Ofev tomorrow. I take my morning pill with a banana, a glass of water and "Premier Protein," a 11 oz high-protein shake. For my evening pill, I skip the banana and drink about half of a shake. So far, so good (knock, knock). But I've read drinking these shakes long-term can have serious side effects. Does anybody know if that's true? Dr. Google isn't clear about that . Same with coffee. Does coffee weaken the benefits of Ofev? (I have Gerd and know I'm not supposed to drink it anyway, but sometimes I just forget.)

REPLY
@robtlhughes

I'm 79, have IPF and Gerd and will finish my first month of Ofev tomorrow. I take my morning pill with a banana, a glass of water and "Premier Protein," a 11 oz high-protein shake. For my evening pill, I skip the banana and drink about half of a shake. So far, so good (knock, knock). But I've read drinking these shakes long-term can have serious side effects. Does anybody know if that's true? Dr. Google isn't clear about that . Same with coffee. Does coffee weaken the benefits of Ofev? (I have Gerd and know I'm not supposed to drink it anyway, but sometimes I just forget.)

Jump to this post

Hi @robtlhughes Thank you for the update on how your treatment is going. You will see that I added your post to the previous discussion you started just before you started Ofev. This way the members who were tagged or responded can see how it's been going like @robinson @ligreen @kpeace @fracturedd @sassyboots and @DennisAJ.

REPLY
@robtlhughes

I'm 79, have IPF and Gerd and will finish my first month of Ofev tomorrow. I take my morning pill with a banana, a glass of water and "Premier Protein," a 11 oz high-protein shake. For my evening pill, I skip the banana and drink about half of a shake. So far, so good (knock, knock). But I've read drinking these shakes long-term can have serious side effects. Does anybody know if that's true? Dr. Google isn't clear about that . Same with coffee. Does coffee weaken the benefits of Ofev? (I have Gerd and know I'm not supposed to drink it anyway, but sometimes I just forget.)

Jump to this post

What kind of side effects are you talking about with the Premier Protein shakes?
If you have any dairy sensitivity, the whey protein and casein can definitely cause abdominal issues if overconsumed – tolerance varies from person to person. They are also sweetened with sucralose in place of sugar, and some people are sensitive to that. Finally, most protein shakes are a poor source of dietary fiber, which can also be detrimental long term, if not combined with other healthy fiber-rich foods, like whole grains and leafy vegetables.

Let me tell you my own experience – for 2 years I was ill with a serious lung infection and the horrible side effects of the 3 antibiotics I had to take to fight it. I was fatigued, coughing, nauseated, losing weight and had no appetite. I turned to the shakes in desperation, to get some nutrition. Dairy-based shakes made me feel worse, so I turned to plant-based protein shakes, which were life-sustaining, but not great all-around nutrition.

I soon learned the lack of fiber was unhelpful, and my friend, who lives on an entirely blended diet due to throat cancer aftereffects encouraged me to "do something better." With her coaching, I began making fruit/vegetable/protein smoothies instead. These contained raw or frozen fruits, berries, vegetables, plain greek yogurt and pea-protein based protein powder. I would blend up a pitcher, pour them in 8 oz Glucerna bottles from my husband and put them in the fridge (or freezer, for travel) and drink 2 per day. I used bananas, berries, beets, avocado, carrots, tomatoes, apples, oranges, peaches, pears, mangoes, pineapple, papaya… This mad me feel much more like I was eating enough of the right kinds of food. I still drank Orgain Plant Protein shakes from time to time, and ate at least one regular meal each day. I continued this for most of two years, while on the antibiotics and as my body recovered from them.

I would say prepared protein shakes are like everything else in life, okay for most people in moderation. We often use them as an afternoon or evening light meal replacement when on road trips, but supplement with a fruit or vegetable, too.

Sue

REPLY
@amandaburnett

Hi @robtlhughes Thank you for the update on how your treatment is going. You will see that I added your post to the previous discussion you started just before you started Ofev. This way the members who were tagged or responded can see how it's been going like @robinson @ligreen @kpeace @fracturedd @sassyboots and @DennisAJ.

Jump to this post

Many thanks for getting my post to the right place. I've already received very helpful advice.

REPLY
@sueinmn

What kind of side effects are you talking about with the Premier Protein shakes?
If you have any dairy sensitivity, the whey protein and casein can definitely cause abdominal issues if overconsumed – tolerance varies from person to person. They are also sweetened with sucralose in place of sugar, and some people are sensitive to that. Finally, most protein shakes are a poor source of dietary fiber, which can also be detrimental long term, if not combined with other healthy fiber-rich foods, like whole grains and leafy vegetables.

Let me tell you my own experience – for 2 years I was ill with a serious lung infection and the horrible side effects of the 3 antibiotics I had to take to fight it. I was fatigued, coughing, nauseated, losing weight and had no appetite. I turned to the shakes in desperation, to get some nutrition. Dairy-based shakes made me feel worse, so I turned to plant-based protein shakes, which were life-sustaining, but not great all-around nutrition.

I soon learned the lack of fiber was unhelpful, and my friend, who lives on an entirely blended diet due to throat cancer aftereffects encouraged me to "do something better." With her coaching, I began making fruit/vegetable/protein smoothies instead. These contained raw or frozen fruits, berries, vegetables, plain greek yogurt and pea-protein based protein powder. I would blend up a pitcher, pour them in 8 oz Glucerna bottles from my husband and put them in the fridge (or freezer, for travel) and drink 2 per day. I used bananas, berries, beets, avocado, carrots, tomatoes, apples, oranges, peaches, pears, mangoes, pineapple, papaya… This mad me feel much more like I was eating enough of the right kinds of food. I still drank Orgain Plant Protein shakes from time to time, and ate at least one regular meal each day. I continued this for most of two years, while on the antibiotics and as my body recovered from them.

I would say prepared protein shakes are like everything else in life, okay for most people in moderation. We often use them as an afternoon or evening light meal replacement when on road trips, but supplement with a fruit or vegetable, too.

Sue

Jump to this post

Sue,
Thanks for sharing your experience. I take Ofev as close as I can to 7:30 am and 7:30 pm. Just before the morning dose I eat a banana, drink water, take the pill ($200 down the hatch) and then a carton (11 oz) of Premier Protein–1 gram of sugar, 3 grams of fiber. In the evening, about an hour after dinner, I skip the banana and half of the protein shake. I like the convenience, and so-far so-good (knock knock). But the shake contains some strange sounding ingredients and minimal fiber. Yours don't.

Can you make a batch–enough for, say, three days–keep it in the refrigerator, and give it a stir or another blast of the blender before each dose?

They bled me Friday to see about my liver, and I'm waiting for the results before ordering another bottle of Ofev. Medicare Part-D makes it financially possible, but even with subsidies I suspect many people just can't afford it. Sad.

Thanks again for the info. My wife and I both appreciate it.
Bob

REPLY
@robtlhughes

Sue,
Thanks for sharing your experience. I take Ofev as close as I can to 7:30 am and 7:30 pm. Just before the morning dose I eat a banana, drink water, take the pill ($200 down the hatch) and then a carton (11 oz) of Premier Protein–1 gram of sugar, 3 grams of fiber. In the evening, about an hour after dinner, I skip the banana and half of the protein shake. I like the convenience, and so-far so-good (knock knock). But the shake contains some strange sounding ingredients and minimal fiber. Yours don't.

Can you make a batch–enough for, say, three days–keep it in the refrigerator, and give it a stir or another blast of the blender before each dose?

They bled me Friday to see about my liver, and I'm waiting for the results before ordering another bottle of Ofev. Medicare Part-D makes it financially possible, but even with subsidies I suspect many people just can't afford it. Sad.

Thanks again for the info. My wife and I both appreciate it.
Bob

Jump to this post

Absolutely, the smoothies are good for three days. If I am at home, I keep them in a small blender jar and just give them a mix. If I am on the go, I just have them in a small bottle and shake them up. My friend keeps hers in pint canning jars to grab and go, but I am too shaky and afraid I will drop them and make a huge mess.
As you said, so many premade shakes have "mystery ingredients" and I want to know what I am putting in my body. Plus the variety is fun – you can make a different blend every time!
Sue

REPLY

Thanks, Sue. I'll do it.

REPLY
Please sign in or register to post a reply.
  Request Appointment