Esbriet

[Lizzy1898]

Are there any people out there who are taking Esbriet for Pfi?

[imelda16]

Hi Lizzie I've taken Esbriet/Pirfendone for IPF two years ago but it didn't suit me I had a bad reaction so after a couple of months I was put on Nintedanib/Ofev which has been a year now and not having too many sideffects that I can't put up with. So my advice is give it a go nothing tried nothing gained. Good luck

[Lizzy1898 in reply to imelda16]

Thanks imelda16, did you get a lot of heartburn taking Esbriet/Perfendone ? or were there other problems ?

[Lizzy1898 in reply to imelda16]

Thanks Imelda16 I hope you have a lovely Christmas

[imelda16 in reply to Lizzy1898]

Hope you have a lovely Christmas and Best wishes for2017 lets hope more miracle cures are found for us all things are changing all the time.xx🎄🎈🍹😄

[Lizzy1898 in reply to imelda16]

Thanks imelda16

[PastMeBest]

Hi Lizzy1898 welcome. Is there anything in particular you want to know about Esbriet Pirfenidone?

People suffering from Pulmonary Fibrosis are a lot less than those with COPD so it usually takes a while for someone to come on and answer your question/s.

I was diagnosed with IPF and was prescribed Esbriet but didn't actually start taking it because they found a problem with my blood. I gave the medication back but retained the booklet that came with it for future reference. If there is any information in the booklet that may be helpful, ask away and I'll see if I can be of any help.

I hope you have a good day.

John

[Lizzy1898 in reply to PastMeBest]

Thanks PastmeBest. but I have looked at all the side effects online. just preparing for when I see my specialist again so I have a grasp on everything, and as you say the blood is a problem, I have had a low sodium count and am forever being sent for more blood tests, not sure why.

All the best

[imelda16 in reply to Lizzy1898]

Hi lizzy sorry for delay in answer to your question the side effects I got was as the dose increased to 3 with each meal it caused a worsening of my condition only happens to a small percentage and I became covered in a red rash which they stopped treatment immediately. The blood test was ok but it does effect a few this way. The tablet should always be taken with food that can stop indigestion or heartburn but taking the full dose of 9 day can be difficult some days. Some people are kept stable on this treatment so it's really worth a try just talk your doubts over with the Dr or Respiratory nurse and you're ok with the answer s then decide. X hope this helps.

[Lizzy1898 in reply to imelda16]

Thank you so much Imelda16, it is good to hear how tablets react, good luck !

[Lizzy1898 in reply to PastMeBest]

Thanks

[PastMeBest in reply to Lizzy1898]

Hi Lizzy1898 I hope you are keeping well and the treatment you had planned is working alright for you.

Just remember, we are all here to help each other or if you feel like it you can just come on for a chat.

Take care.

John

[Lizzy1898 in reply to PastMeBest]

Thanks PastMeBest

[Northendgirl]

Hi Lizzy. I was diagnosed in May 2018 with IPF. I’m getting ready to start my 3 pills with every meal which will equal the dose of 9 a day. The only side effect I get now is diarrhea sometimes. I’m just keeping my fingers crossed that this pill will work for me. Any questions I’d be happy to answer.

Lorraine