Was diagnosed with IPF 12 months ago and it is steadily getting worse. Have been on Azathioprine for 3 months but a Liver Function Blood Test has shown a worrryingly high level of one of the items they check so have been taken off and am only on 15mg Prednisolone until this level comes back to normal.

When it does they want to put me on to Pirfenidone which can have so many side effects that I don't feel I want to have this. Quality of life against extra time!

Anyone been on this medication, and if so, how did you cope with any side effects? Also did you stay on it or were you taken off?

10 Replies

  • They cant force you to take anything you dont want to so i think what your doing now by asking and looking into other things is a good idea ....you can get lots of information then talk it through with your doc

    Let them know your worries if you dont tell them they wont know

  • Thanks. I think at the moment I might be suffering from information overload!! Docs are so concerned to tell you everything that they tend to frighten you off.

  • Ive been on Pirfenidone last year and no one forced me it's a very expensive drug and research on it is still being done. I was given lot s of information an expert Respitary nurse who is at the end of the phone if you are worried. The drug company has a Nurse keep contact with you and an information pack. You have to take 9 capsules a day 3 with each meal always with the food because they cause indigestion and acid reflux so it's not an easy decision. I have IPF and unfortunately had a bad reaction my chest was covered in a rash and wasn't well at all so was told to stop taking them it caused worsening of my condition. I hasten to add that doesn't happen to most patients and we all respond differently if we don't try what else is there.

    Well being a devil for punishment I am now trying another drug called Nintedanib up to now 3mths but only 2daily 1 at breakfast 1evening meal again with food and haven't had any problems so far. I will be having a check up next week and usual blood test and see if any changes. There is no other treatments out there so why not. Good luck

  • This info' is very useful. Did you have any other reactions to Pirfenidone?

    I have heard about this new drug but I understand you can't have it prescribed until you have tried Pirfenidone and found it not suitable due to reactions such as yours.

  • Hi geofreda about Pirfenidone I did have other reactions such as nausea , vomiting and although it wasn't a problem for me because I always stay out of the sun. anyone that likes the sun has to stay under cover at all times and wear a high factor sun cream also it effects appetite and taste..Some may not have these effects for long .

    Nintedanib doesn't carry as many side effects but it's not a cure it may slow down the progression so it's worth trying if your offered it ,to have either of these drugs a patient has to fall into a certain criteria but what that is i don't know it's about lung function results and ct scans and how far the condition has progressed. Hope this helps.

  • Your reply is very helpful. I understand you cannot be prescribed Nintedanib until you have been on Pirfenidone for some time and had to be taken off it.

  • I have IPF and was perscribed Nintedanib (now know as Ofev) as first medication on a named patient programme. Have to have limited FVC or problems with gas exchange. I have no real side effects apart from a lot of mucus - think it is helping

  • I am on pirfenidone,came off it for a few months because of side effects then went back on it slowly,this time tolerating it well,my breathing tests have improved slightly,so a good sign,I hope you are being seen at specialist centre as I am surprised you are on azathioprine and prednisone as these are not now prescribed for IPF,it was an old treatment and was thought to be useless for IPF.Are you aware of the Pulmonary Fibrosis UK site,on facebook it's a closed group and we are over 2000 members ,the help and info on there is superb,and there are now lots of support groups being set up around the country.this is a difficult disease to come to terms with,we need all the help and info we can get,please join us on facebook,we are a wonderful community.Sooki.

  • Very interesting. I had also read recently that azathioprine and prednisolone were not considered the best treatment these days. I have been taken off aza as some Liver Function Blood Tests showed an alarming reading so am only on Preds at the moment.

    Am not aware of the Pulmonary Fibrosis UK site on Facebook and may well now pursue this.

    I am being treated at a specialist centre and have my next appointment in a month's time.

    Thanks for taking the time to write and good luck.

  • Not even giving him this.

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