Pulmonary Fibrosis Patients Share Their Experiences With Ofev


Ofev (nintedanib) is an anti-fibrotic drug used in the treatment of pulmonary fibrosis (PF) to help to slow down the progression of the disease. It was approved by the FDA in October 2014.

MORE: Nine steps for managing pulmonary fibrosis.

The online patient platform Patients Like Me is a great tool for discovering how well other people with chronic illnesses are faring on various medications. It allows patients to document their experience with a treatment, including how effective it’s been for them, if they’ve had any significant side effects, what dosage they’re taking, and if they’re still taking the medication.

The site also allows patients to document other information which may be useful to fellow sufferers such as how expensive the medication is, how easy it is to adhere to the medication schedule, and what other medications they’re taking.

Sixty people with pulmonary fibrosis have added details about their journey with Ofev so far. Thirty-nine of those said they had suffered some side effects ranging from mild to severe. The most commonly reported side effects were diarrhea and decreased appetite.

Only nine of the patients had stopped taking Ofev with four of those stating the reason for stopping was that the side effects were too severe.  The majority of patients were taking 150mg of Ofev twice a day and found adherence easy.

MORE: 7 commonly-asked questions about Ofev

Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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  1. Don Dove says:

    Ive been on Ofev about 3 weeks and the only thing I can tell, as far as side effects are concerned, is that I do have a loss of appetite but ay the same time, I’m having a serious craving for chocolate! Other than that, I’m doing fine so far.

    • RON Farndon says:

      I’ve been on it for 6 months. My taste for food is terrible. I can’t stand beef or even bacon now. They upset my stomach. I’m enjoying my food much less now. Fruits and vegetables still are ok. I have to take 2 Imodium pills a day to control diahria.

  2. Javed iqbal says:

    I am having Ofev for three weeks and I have constant diarrhea. To control I take one capsule of Imodium daily

  3. My husband takes Ofev. At first he diarrhea. So he learned to avoid certain foods. Approximately a year later his diarrhea came back very severly, and he had to cut back to 100mg twice a day. It also ended up making him lactose intolerant.

    • Sylvia says:

      I am very interested about the lactose intolerance mentioned by Dawn. My husband has just started lacto free milk to see if that helps his severe diarrhoea. Has anyone else tried this?

  4. Dixie Rose says:

    my taste buds must have been effected as I’ve lost any appetite for certain foods I used to love, + I get full so fast my husband and I split a meal everytime we go out as I can’t eat musch at all.

  5. Rachel says:

    I have been taking ofev for 5 months. Was taking 150 mg but was cut down to 100mg twice a day. I have constant diahrrea, throw up about twice a week and now have a low platelet count. I also can’t get rid of a cough.

  6. Linda Smith says:

    Ofev has worked very well for me. I have had all the predicted side effects (not as severely as some others have) but have learned to anticipate the problems.

    Ofev seems to have reversed much of my IPF, which I had not expected.
    As for loss of appetite, I needed to lose a few pounds.

    My wonderful doctor is so pleased with my progress (or lack of deterioration). I had over the years been diagnosed with COPD, asthma, emphysema, and
    chronic bronchitis. Now I’m being treated for what I actually have.

    I’m so lucky.

  7. vivienne mills says:

    Please if there is any help out there for me i would be thankful i have IPF using 2 liter of oxygen not on any medication but haveing shortness of breath a messerible life most time i wish i could breath i would felt so happy sometime felt like i want to end my life but i want to live for my Children and grandchildern my hearth is so broken i am in tears because i know this is going to get worse for me and i dount know what to do Dr already said that i dount have much time to live if there is anybody out there can help me to get on ofev medsication may be that will help me

  8. Vicky Huskey says:

    I’m starting ofev this week and I’m worrying about the side effects. Is there any recommendations for the side effects

  9. Gary Elofson says:

    You need to get on Ofev. It can help you. I have have had a lung disease since 1995. Progressively getting worse. Dr gave me a year to live then. I have been on Ofev for two months and the Dr thinks it will keep the lungs from getting worse. I use oxygen for a portion of the day. The drug has to be taken every 12 hours with food. Diarrhea is the big problem. I am low on energy and have headaches and stomach pains. I can live with those things. Good luck.

  10. Visited my Pulmonology Doctor yesterday. He has prescribed OFEV, so I haven’t started taking it yet, but I am concerned about taking this drug. So many common side effects. Does it just extend our lives to live in total discomfort? At nearly 82 years of age, I haven’t really seen the benefits, just the terrible side effects.

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