Viewing 11 reply threads
  • Author
    Posts
    • #29527
      Jeff
      Participant

      I’m either very lucky or my meal research and implementation is working. I have experienced no side effects at all so far, knock on wood!
      Here’s my menu plan.

      On a typical day I eat 7 small meals per day at 8, 10, 12, 2, 4, 6 and 8. My 8am and 8pm “meals” are a banana with a little Smuckers Natural peanut butter and my Ofev.
      10am is usually Greek yogurt with some walnuts or an egg beaters veggie omelet. 12pm is a lean protein. Usually baked chicken, turkey, tuna or salmon with deviled crab. At 2pm I work in a steamed veggie like broccoli, baked sweet potato or a salad with olive oil and red vinegar. 4pm is typically a fresh fruit like an apple, peach, dark cherries or nectarine. At 6pm I do more lean protein as listed above and 8oz of low fat cultured buttermilk. I’m weird but I like it😋
      I deviate occasionally except for the banana and peanut butter. It has been keeping the nausea away.

      I have stopped eating fried and sugary foods.

      Maybe what I’m doing may help others suffering with Ofev side effects. Best wishes to you all!

    • #29537
      Alex M
      Participant

      I have been on Ofev for about 6 weeks now and haven’t suffered any side effects I can put down to Ofev . Prior to starting I was getting depressed just thinking of the side effect especially diarrhea. Changed to low fibre and extra protein but now back to normal eating, my stool hardened up a little and bit irregular but ok.I’m interested if any one has had blood thinning issues or troubles with incisions like skin cancer removal,I had bad nerve pain, bleeding and infections. Considering I’ve had many removed without problems.

      Alex

      • #29538
        Jeff
        Participant

        Hi Alex!

        I take Plavix and an aspirin every day due to a prior heart attack. It worried me a bit when I heard that Ofev also thinned blood. I’ve been on Ofev about 2 weeks now and I have noticed slightly more bruising than what I had with Plavix alone.

        I haven’t had any surgery yet but your experience may be in my future as I will have a defibrillator replaced in a year or so.
        The only advice I can offer is to make sure you let your doctors/surgeons know your experience so they can adjust to make you as comfortable as possible. Stay strong Alex and best wishes!

        • #29748
          Brian Davy
          Participant

          I have been on Ofev  for the past 3 years ,was initially taking 150 mg twice a day was ok for the first 2 years then went down to 100mg  and its easier on the stomach

          I am pleased to say that my last C T scan showed that the progression had slowed

          Also taking Gabapenton for my cough, also seems to help

           

      • #29756
        William Giese
        Participant

        Been on OFEV for over two years.
        No side effects but I am on a low carb (25-50 per day) program.
        Works for me.

      • #29759
        Allan Byron
        Participant

        Hello Jeff,

        I wrote down what you eat, and may follow it. Thanks a lot, and best of health.

        Allan

      • #29764
        Thomas Johnson
        Participant

        Hey Alex,

         

        At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous!  Plus, my skin seems thinner and breaks open frequently…and more bleeding, too.  Not sure if it’s the OFEV or one of my many other medications.

        UPDATE:  I copied this from the OFEV web site:

        “OFEV may increase your chances of having bleeding problems. Tell your doctor if you have unusual bleeding, bruising, or wounds that do not heal. Tell your doctor if you are taking a blood thinner, including prescription blood thinners and over-the-counter aspirin.”

        Tom

      • #29763
        Thomas Johnson
        Participant

        Hey Alex,

         

        At 74 I tend to bruise pretty easily, but since I started OFEV in January, it’s been ridiculous!  Plus, my skin seems thinner and breaks open frequently…and more bleeding, too.  Not sure if it’s the OFEV or one of my many other medications.

        Tom

    • #29550
      Ping Xu
      Participant

      Hi, Jeff, thank you for sharing your experience with Ofev. I am so happy that you are not experiencing any side effects and hope that it continues this way. I was diagnosed at about the same time as you and we are both from Indiana! It is very nice to see someone on the forum that is close!

      • #29712
        Jeff
        Participant

        Hi Ping!

        It is nice to know there are others in the neighborhood on the forum. Maybe someday my wife and I could meet with you and your family for dinner or something.

        I hope you are getting along as well. Stay tough and best wishes!

    • #29578
      Mary Ward
      Participant

      Thank you all for sharing

      it means a lot to me

      as a nurse i am always interested in the whole picture

      we need to continue to stay strong and support each other

      again

      thank you and take care

    • #29640
      Marsha
      Participant

      Alex-

      i was diagnosed with IPF in 2018. I began taking Ofev shortly after diagnosis. I had a Moh’s procedure for basal cell carcinoma on my scalp, 12/2020. I’ve had crazy nerve pain and other unexplained symptoms. The wound has been slow to heal and my scalp is still numb. I get terrible migraines as well.I had no idea that some of this may stem from the Ofev. I’ve also had plenty of skin cancer removed prior to Ofev without incident. Thank you for your post! I will research this. Marsha

    • #29721
      Robert M
      Participant

      I started taking OFEV 150 2x per day in April 2018. Most serious side effect was violent diarrhea 2-3 times a day.  I had never had an issue with that and did not know how to deal with it.

      Took many medications on doctors advice but to no avail. Last year, early 2020 started with Immodium Gelcaps, not the generic.

      One a day started to help, about a month later still some issues, doctor said take one in morning and one in evening if needed.

      I cannot say enough what a relief it has been not to have to schedule my daily travels around where the nearest clean bathroom would be. Especially after covid hit and many were closed.

      I am not advising anyone to take it only that it works for me 95% of the time. It is on amazon, I  think $11 for 24.  They are a little difficult to open each one but worth the effort (for me).

      Best of luck to anyone with this nasty side effect.

       

      • #29739
        Mack
        Participant

        Hi Robert, I’ve been on Ofev 150 twice a day since 5/27/21 and have very serious diarrhea every day. So I’ve stopped taking since last Saturday and am back to normal. The Ofev stopped my cough and helped my breathing. I have tried the immodium gelcaps and they didn’t work either.

        any other ireas ?

    • #29749
      Joan Thorkelson
      Participant

      Thanks for your tips – I also vomit from time to time and it is because I take OFEV without enough in my stomach. I like the idea of small meals and I shall try to do what you do.

    • #29767
      Mike McCutcheon
      Participant

      I take 3,000 mg Cellcept and 40mg prednisone and 6 Esbriet 267 mg per day. Had serious diarrhea but started Imodium a week ago and it went away

    • #29781
      joe hick
      Participant

      Started taking OFEV a few days ago. No issues so far, but have a liver disease that needs to blood tested once a month. I’m hoping I can continue.

    • #29827
      Augusta Adkins
      Participant

      I started taking Ofev 3 1/2 months ago with no side effects. Then 2 weeks ago started nausea, major loss of appetite, and weight loss. My doctor had said a lot of his patients don’t have side effects until after 3 months. Now I am trying ways to get pass this. I sure miss the easy path.

       

    • #29828
      joe hick
      Participant

      Started just 5 days ago and finding pain in my liver area. I do have liver disease,  but was going to have it monitored by blood tests. I’m going to stop it now and infom the Dr. I guess what’s worse liver disease or lung disease?

    • #29831
      Marianne
      Participant

      Hi everyone –

      I was diagnosed in May 2019.  Began taking OFEV later in 2019.  Take 150 mg 2 times a day.  Very few side effects.  Occasionally, I have a couple of days of loose bowels.  It seems like the OFEV has been keeping my IPF fairly steady until this year.  My last two PFTs haven’t been great.  After PFTs and 6 MN walk in February I started on 2 lt of oxygen on exertion.  See pulmonary doctor on Thursday.  I am assuming from latest 6 MN walk and PFTs tests that doctor will increase amount of oxygen.  6MN walk test was great for distance 1,950 feet (prior one was 1,700) but dropped oxygen level to 84 while on 2 lt of oxygen.  Do not yet need oxygen 24-7 or at night.  I am also coughing more.  Sometimes now coughing up thick mucous.  I also have high blood pressure, acid reflux and Type 2 diabetic.  I have been walking more and going to the gym almost daily.  Try to eat a healthy diet.  Also have liver blood panel pulled every 3 months because OFEV medicine can damage your liver.  So far my liver panels have look good.  Slight decrease in numbers on PFTs this time.  Looking forward to what the doctor thinks of recent tests.  Also had an ABG and HAST to see if I can fly in airplane without oxygen.  Pretty sure the answer to that is going to be no as I dropped my oxygen level under 89 after 5 minutes of breathing air similar to an airplane.

      Marianne

Viewing 11 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account