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  • I have been taking the same amount as you. I take an Imodium with each pill. I also take a chewable Pepto if my stomach talks to me. I can’t handle much fiber so I stay with canned fruit and veggies, no salads. One of the earlier posts suggests protein with each pill. I find just eating anything helps. Yes, sometimes I get diarrhea, but not bad u…[Read more]

  • I have been taking Ofev since early in 2016 right after I was diagnosed with IPF. My lung capacity has not gone down since I started Ofev. It’s painless and the patient has nothing to lose. A program helps with the cost and my insurance covers the rest. Get them to start, it is never too soon. A good lung doctor would be pushing the medicine. T…[Read more]

  • I have been taking Ofev since January of 2016. It has been working extremely well. The side affects are handled by taking Imodium. I take 2-150 mg pills and 3 Imodium, 2 in the morning and one at night. I also make sure to eat something with the medicine. I am not very active as I just cannot breathe when doing almost anything. Ofev is definitely…[Read more]

  • George A Rydberg replied to the topic Ofev in the forum Ofev (Nintedanib) 1 year, 11 months ago

    I have been taking Ofev for over 3 years. I have not had to pay anything. My insurance pays after my co-pay. Open Doors finds help with the co-pay. I don’t know anyone personally who has not been helped by Open Doors with the co-pay. My doctor set it up when he first diagnosed me with IPF. Don’t delay starting Ofev as it works.

  • Good morning Charlene,
    An update after a doctors visit. I had a very good checkup. I attribute it all to Ofev. My 6 min. walk improved for the second time. My lung volume went up to 67% from a low of 57% 2years ago. I am quite pleased and the results sure help to stay positive on not so good days.
    Thanks for listening,
    George

  • I started Ofev immediately after being diagnosed with IPF.
    When I started I was told it was moderate
    The doctor told me Ofev was less pills to take and suggested trying this
    I have been taking Ofev for about 30 months
    My side affects are very minimal. I really don’t notice anything now.
    I have IPF
    I have remained stable since starting Ofev. I am h…[Read more]

  • Charlene,
    Concerning appetite and IPF. I have had no loss of appetite with this and I take Ofev. I am diabetic and the doctor prescribed Victoza to help control diabetes and weight. Victoza is working as I am down 48 pounds in about 6 months and sugar is completely controlled. I do have trouble breathing if I eat even a moderate amount, but I…[Read more]

  • Charlene,

    I have been doing rehab for 7 months. I decided to give it a try and it has helped. I increased the length I walked in the 6 minute test by 20% so I am happy. The program I go to isn’t recognized by Medicare so I am a self pay, but I don’t mind that. The nurses are very educated and also very friendly. It is a good social time and hel…[Read more]

  • I decided I have a good life no matter what. Good wife, good life. I go slow, but try to stay involved with things that mean something to me. Pulmonary rehab twice a week with great nurses and other great patients.

  • George A Rydberg became a registered member 2 years, 11 months ago

    • Hi George, thank you for joining the PF forums. Welcome!

      • Thank you for sharing George I was diagnosed with IPF in March of this year although I have had breathing issues for the past 6 years.My family Dr.was treating me for COPD.I am on oxygen 24/7 my life as I knew it is gone so I must adapt to this new life.I will be going on OFEV on Thursday and hope I have good results.

        • Hi @brian-thomson, goodluck with starting Ofev today! I’ll keep my fingers crossed that it goes well for you. I am also on this drug and experienced very little side effects, so I am pleased with it so far. Hope the clear diagnosis of IPF vs. COPD and a subsequent treatment regimen will help alleviate some of your breathing issues. Feel free to…[Read more]

        • Hi Brian, I have also been on oxygen 24/7 since Jan 3rd 2018, life changing to say the least, worked full time in December at a job I loved ….heading to Toronto on Jan 11, listed now and meetingnthe surgeon on Mon. Jan 14……I’m happy to chat with you anytime …..I’m 65 …(don’t know how that happened) …..YIKES

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