Ofev

[Looseloafers]

Hi everyone hope you’re doing well. My consultant is thinking of prescribing Ofev for my IPF I heard the side effects can be awful! Any info would be appreciated 🥴🥴🥴

[Johnsel]

Hello Looseloafers my husband was given Ofev last January and has had no side effects at all, although his breathing has got worse but this could be down to hot weather as we live in Spain.

[Bee61]

Hi

I've been on Ofev for just over a year now. The side-effects are minimal for me. I take the two tablets roughly 12 hours apart and always while eating. I have occasional nausea - usually related to higher-fat foods, which I now tend to avoid/minimise where possible - so only a small amount of cheese at a time or only a small portion of fatty meat like pork. I eat a lot of fish & vegetables & am always fine then. I've very occasionally been a bit loose when going to the loo - but very rarely and again probably related to something I've eaten. My consultant recommended keeping a food diary so I can work out what affects me. My first breathing tests after taking the drug were an improvement - but consultant thought that was probably due to the steroids I'm taking too. I've not had any tests since Feb - June appointment has been postponed until Dec because of Covid. But I'm feeling really well & am able to walk up hills more easily than last year. I'd recommend giving it a try - everyone is different & the side-effects may not be too bad for you.

Hope this is helpful - just say if you have any other questions

[Looseloafers in reply to Bee61]

Thanks Bee61 I’m at the stage of giving anything a try! My appt is 20th so will see what happens I’m on 4lt oxygen but would love to do without it!

[Bee61 in reply to Looseloafers]

Best of luck!

[Suzie42]

I am 4 weeks in using Ofev and my first blood test shows a rise in ALT in liver will be waiting for advise from Brompton next week. I've had both vomiting and diarrhoea but seem to have it under control now. I would give it a go.

[Suzie42]

I have heard from the Brompton today that my ALT has gone from 24 to 97 so I have to come off taking Ofev for 2 weeks then have blood test and if ok they will start me on a lower dose.