Perfenidone or Ninetedinab, that is the question?

[Mrbojangles]

If anyone with IPF has experience with either of these 2 drugs i would really appreciate your views.

Due to start one of them soon and been asked by the docs to have a think which one.

Many thanks and stay safe x

[Suzie42]

I started on Ofev last summer, having side effects, sickness and diarrhoea. I was given anti sickness and loperamide for diarrhoea. My lung function improved this year so want to stay on them. When i was given choice of the 2 meds, i decided i would rather take a tablet twice a day rather than three times daily. Also the other one you have to wear sunblock or stay out of the sun and as i love the sunshine it was a no brainer. Many dont suffer too much from side effects so its worth trying. Like many others you need to have a big protein meal before taking tablet to help stop side effects. Good luck and please let us know how you get on. x

[GemGem47 in reply to Suzie42]

Hi I’m starting OFEV this week, what do you mean by big protein meal, they asked what I had for breakfast I told them porridge and a banana, they said this was not enough to bulk it out with toast as well

[Suzie42 in reply to GemGem47]

Eggs are good. I buy protein bars and protein (soya) yoghurt for breakfast and an hour later I have some toast or egg then. It's hard for me to eat that early, so I have the yog and p.bar then Ofev at about 7am. At about 9am I eat some more I e toast, or egg on toast or eggs and bacon. I find I'm better with as much food as possible in the morning for less side effects. I found porridge made me feel sick. I used to always eat porridge for breakfast and I do miss it. I also found side effects didnt kick in fir 2 weeks for me. Good luck

[GemGem47 in reply to Suzie42]

Thank you, a little bit clearer

[Suzie42]

I should have said Ofev is Ninetedinab

[Mrbojangles in reply to Suzie42]

Thanks Suzie, like you i love the sun though always have factor 30 and a hat.The nurses are telling me it’s nearly 50/50 with Pirfenodone slightly edging it.

I am leaning towards the ninetedinab purely because there appear to be less side affects but am studying the efficacy studies online.

Thanks for your input xx

[Suzie42]

Hopefully you will have a few more people answer. At the end if the day if you can tolerate either one it will be good.

[HighGables]

Hi Mr B, I started on Perfenidone but it didn’t agree with me, I just felt so ill. They reduced the dose and the following year when Nintedanib became available I started on that. Again I was quite unwell so the dose was changed from 150mg to 100mg, and is what I’m still taking. Both drugs have unsavoury side effects but we are all different and it may not affect you in the same way.

My worst effect is with the bowels and I sometimes have a few weeks off to give it a rest. I do have loss of appetite and interest in food generally, so have lost weight.

There are times when I would like to stop taking the drug, but then think its probably the only thing keeping my lungs going. My con said that if I stopped the drug I couldn’t go back onto it !

I think you need to read up the info on them both and hopefully one will stand out for you.

I really hope your experience is problem free and your lungs get the very best benefit from them.

Take care. Jax 🐶x