Nintedanib

[Almaz65]

I've recently started to take nintedanib for my fibrosis which I have in both lungs, I've had hypersensitive pneumonitis for some years now (I'm 70) and also take prednisolone but I'm struggling with nausea and diarrhea and would like to know if this improves after a few weeks/months. The side effects are making me feel low. Has anyone had any experience of nintedanib.?

[Tawny10]

yes absolutely!

I have the same ILD & started Nintedanib a year ago. I find if I take it after breakfast & dinner & stay upright the nausea isn’t too much of a problem.

I also take a probiotic to support gut heath.

Just live in hope it’s extending my life 🤞🏼

Stick with it … hope it settles down 😁

[Almaz65 in reply to Tawny10]

Thanks Tawny, that sounds encouraging!

[Flowerpower12345]

hi I’ve been taking nintedanib for nearly two years for IPF.

I have had random bouts of nausea and tummy upsets, you ban can med from doctors to help with this, I found these side effects are very random.

My consultant has now refused the dose to 100 mg twice a day, which I find has helped.

Stick with it if you can and I wish you all the best

Deborah.

[Almaz65 in reply to Flowerpower12345]

Thanks that's very helpful, I'll persevere but it's very difficult!

[Flowerpower12345 in reply to Flowerpower12345]

Sorry reduced not refused

[Oshgosh]

hi,I’m on Nintendanib on lung fibrosis.

I can’t tolerate the 150 mgm dose,it knocks me flat,all I can do is go to sleep.

However the 100 mgm dose twice daily suits me ok.

The nausea has been an issue,the GOgave me tablets which go under my gum,work really well for me at the moment.

When I was struggling I rand the ILD pharmacist,she was very helpful,advised me to go back on 100 MGM’s.

[Almaz65 in reply to Oshgosh]

Thanks for your help, the tummy problems are definitely an issue but I will carry on for another week.

[Germantara]

Sorry can't help I hope you get some good responses from this forum take care

[Almaz65 in reply to Germantara]

Thanks I appreciate that 😊

[cazza34]

Hello Almaz65Like yourself I have lung fibrosis and hypersensitivity pneumonitis. I've been on Nintedanib for 2 years I take 3 in the morning and 2 evening 12 hrs apart. I did have nausea and diarrhoea to begin with, but it settled down. I take Lanzoprazole first thing in the morning as I also take 10 mg prednisone daily. I do find that if I take Nintedanib after food it's fine.

[Almaz65 in reply to cazza34]

Thanks cazza, it has been easier today so I'm hoping it will settle down. Thanks for the advice.