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

Posted by robtlhughes @robtlhughes, Sep 2, 2021

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.

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robtlhughes | @robtlhughes | Oct 24, 2021

Thanks, Sue. I'll do it.

hellokris | @hellokris | Sep 27, 2022

In reply to @sassyboots "Has anyone with IPF had Covid?" + (show)

Yes, though fully immunized, I got covid in February of this year. Quite sick. Pretty much all in the lungs. Then sick again in May again with chest cold like symptoms, but negative covid test. I had CT last week indicating PF. I'm waiting to see a pulmonologist next week. I can't help but feel this may have been the cause, or at least contributed.

bjbraz | @bjbraz | Nov 10, 2022

My husband has been diagnosed with PF. The diagnosis came about 8 months after he had covid. No one ever did a brochoscopy but the CT scans showed scarring in the lungs. He started Ofev but after 10 days his liver enzymes were very elevated so the Ofev is on hold until more labs are completed (a month after the Ofev was stopped). He never had any other side effects other than stomach pain one time when he didn't take the medicine with food.

suzcape | @suzcape | Jan 10 11:05am

In reply to @amandaa "Hi @robtlhughes Thank you for the update on how your treatment is going. You will see..." + (show)

Diagnosed w/Pulmonary Fibrosis Nov 2020. Just prescribed to take Ofev. However have been delaying starting them. Nervous of side effects, so various experiences of others may help. Hard finding info from others. Appreciate all the feedback. Aware all bodies have different responses. Pharma has not helped allay overall fears.