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.

4 comments

  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

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