Nintedanib

[juliecarey]

Hi I have ILD and my Consultant is thinking of putting me on Nintedanib. Just wondering if anyone is on this and how they get on. Thanks

[MMaud]

Hi Julie. I have been taking Nintedanib for about 15 months and get along fine with it.

Is there anything in particular you’d like to know?

[juliecarey in reply to MMaud]

Hi thanks for your reply. Nothing in particular thanks just wanted a general view on how people were finding it.

[maisied in reply to juliecarey]

I have Sjogrens and ILD and am on Mycophenolate. My respiratory consultant has never mentioned nintenabib for me. Does the need to have that particular drug go by lung function readings do you know?

[juliecarey in reply to maisied]

Hi I also have Sjogrens and am on Mycophenolate. I’m not sure about function readings I’ve not been well for a few months with chest infections and my condition has slightly deteriorated. Consultant mentioned casually about Nintenabib I’ll ask for more information next time I see her

[Tawny10]

I have been on it for a month now & getting on fine. Had nausea & headache day 2 but nothing since. I do make sure to take it with a meal.

[juliecarey in reply to Tawny10]

Thanks for the info

[Seaberg in reply to juliecarey]

Hi Unfortunately I didn't react well with nintedanib. It was fine fine for a short time but then nausea, sickness and diarrhea took over my life. I have ILD and take steroids and micophenolate. As soon as I stopped nintedanib all the symptoms disappeared and I rediscovered my energy. It obviously isn't inevitable that everybody reacts in the same way and I hope you find it helpful if it is prescribed for you. It will be worth trying!

[juliecarey in reply to Seaberg]

Sorry to hear it didn’t agree with you. I’ll have to wait and see what my Consultant says. Thank you for your feedback 😊

[MMaud in reply to Seaberg]

Seaberg, has a trial of Pirfenidone been mentioned at all?

When discussing Nintedanib with my Consultant (before starting taking it, then before a subsequent lung function test), she confirmed that if for any reason I had to or chose to stop taking Nintedanib, provided I still met the lung function requirements, I could try Pirfenidone.

I initially rejected Pirfenidone, in favour of Nintedanib because I am a keen gardener and walker and Pirfenidone's potential for light sensitivity issue with the skin.

Maybe worth the chat? Nothing ventured.

[juliecarey in reply to MMaud]

thank you I’ll mention it

[Seaberg in reply to MMaud]

Thank you I haven't had Pirfenidone mentioned to me. WHEN i next get to talk to the consultant I will ask about it.