Pirfenidone for IPF

[imelda16]

Started treatment this week and want to know if anyone takes it and also has to take warfarin for AF and if it effected their INR. Also does any type of food effect them when taking it .

[Gillsboy]

Hi Imelda I have been on Pirfenidone for six weeks. I have been lucky not suffered too many side affects apart from tiredness I sometimes have to goto bed early. I would recommend to wear factor50+ sun lotion I get mine prescribed by my GP. I have changed my eating habits and eat a lot healthy foods, I find this takes my mind of IPF, exercise within your limits this also helps against the long battle.

[Grampy16 in reply to Gillsboy]

I have been on pirfenidone for 3 years and haven't had any side affects

[Brecksfield]

Hi, were you told not to eat grapefruit?, as this can reduce the effectiveness of pirfenidone. I have been taking pirfenidone for almost a year now and tiredness is the side effect that bothers me most.

There are times I wish I could stop taking this drug just to see if I felt any better in myself.

[imelda16]

Thanks for your replies Gillsboy and Breksfield

I know about the grapefruit and sun effects and I was feeling tired due the desease but when I rang my Anticoag nurse she had never heard of the drug so I will be having my blood test brought forward to make sure it isn't effecting my INR. I was hoping someone may have known about it. I am not expecting to feel any better but do hope I don't go worse. We just have to take what's on offer a big thanks again.

[Sooki in reply to imelda16]

Hi,I have been on it for nearly a year,yes the sun does affect you,had some diarrhoea ,not too bad now,very little appetite,and blood tests to start every month now every 3 months,my liver function is fine.If you are taking reflux drug omeprazole it needs to be changed to lansoprazol ,most of us with IPF seem to take reflux drugs.i have also stopped taking NAC as trials do not seem to indicate that it helps.There is a huge number of us on Facebook On the fibrosis uk page .Keep taking it your body will get used to it,I have been stable now for the last 6 months. Sooki.

[yumyum in reply to Sooki]

Hi Sooki just been offered Pirfenidone as my oxy levels have gone down still taking NAC but about the sun i was hoping to spend some time at my sons in Tenerife this winter but maybe i will go and stay out of the sun.The Humidity levels cause me breathing problems it is 96% here today in Tenerife the levels are 50 to 60% all year have you considered Humidity levels may cause breathing difficulties best wishesYumYum

[Sooki in reply to yumyum]

I am in Majorca at the moment,very hot,but with my oxygen I am coping,although I really don't like this heat,it's 90 today,unusual for this time of the year.Taking a chance with no travel insurance,hoping the air con doesn't affect me.I try and stay out of the direct sun,use 50 plus and carry a small umbrella as sun shade.I am doing well on pirfenidone,stable for last 6 months,just no appetite.I have stopped taking the NAC,no noticible difference,in fact probably feel less nausea.hope you do well with it,just takes time for your body to adapt.Best wishes Sooki.

[imelda16]

Thanks sooki

I do intend to give it a good run until I'm accustomed to taking it and I am already on Lansoprazole and of course other medications but the consultant has all that info so I presume it's o k. The main problem to me will be taking enough food with the 3 a meal dose I have had to start eating a lunch sandwich which I don't feel like. A breakfast and evening meal was all I had which are not large as I don't have a big appetite . And good luck.

[imelda16]

For anyone wondering about their INR on Perfenidone and taking warfarin I found it has effected it and am still not stable also had two infections and had to take Antbiotics and seem to have every side effect apart from sun . Not as lucky as sookie and yum yum hope you both had a great time. I don't sit or walk in the sun anyway so don't think that sideffect will be a problem. Early days yet.