Recently diagnosed IPF

[iain123]

I am struggling with being told that I have IPF I am on oxygen for moving around. Been proscribed pirfenidone but makes feel very sick only taking 2 three times a day for 2days what should i do.

[mrsmummy]

Hello Iain123 and welcome to the forum. Unfortunately sickness is a common side effect of pirfenidone. If it is troublesome do go back to your GP.

[skischool]

Ian 123 welcome,there are quite a few people on the site diagnosed with IPF and many of them are probably taking pirfenidone or nintedanib or even the double therapy and will have loads of advise on medication and other issues with IPF,i am sure they will come along soon with advice and support............regards Skis and scruffy

[Helen6]

Hi Iain, I also have IPF. Like you, I couldn't tolerate Pirfenidone. I felt constantly nauseous so I switched to Nintedanib which was much better for me. I would recommend that you do the same. I can't guarantee that it will work for you but many people do find that they tolerate one of these drugs better than the other.

Good luck.

Helen

[iain123 in reply to Helen6]

Thanks i have decided to try nintedanib starting Tuesday.

[iain123 in reply to Helen6]

Just to let you know that I tried Nintedanib 150mg but after 1hr 30 minutes of taking the tab I was very sick. Been off tabs for a few weeks but due to start again at 100 mg with anti sickness tablet. How are you going.

Iain

[Helen6 in reply to iain123]

Hi Iain, I took Nintedanib for a while and whilst I tolerated it quite well, my condition continued to deteriorate. I told my consultant that I wanted to discontinue using it and he agreed with me. I'm now on the transplant list so all I can do is to wait and see. I hope you have better luck with Nintedanib.

Best Wishes,

Helen

[iain123 in reply to Helen6]

Hello Helen, sorry to hear that Nintedanib didn't agree with you i have yet to start again. Have been a little under the weather the last few days, afraid to start in case of being sick, i seem to feel sick most of the time. Must start again will do over the weekend.

Hope you don't have to wait too long keep smiling although it may be difficult.

Iain