I have the opportunity now to go onto a drug to help with IPF. My choices are Nintedanib or Esbriet (pirfenidone)
The side effects of both are not special, just wondered if you good people out there have any experience on either. Theses drugs were recommended by the Brompton Hospital, look forward to you answers.
Hi Robin, I have tried both of these drugs. I tried Pirfenidone first but felt constantly nauseous. I got on much better with Nintedanib but other people have had the opposite experience. To be honest it seems to be a bit of a lottery which one your body tolerates best. My advice would be to just choose one and try it.
Good luck.
Helen
Hi Robin.
I’ve been on Nintedanib since the end of last year and the only side effect has been occasional diarrhoea which isn’t too awful. Pirfenidone seems to have a longer list of possible side effects and nausea seems to be fairly common.
Personally I hate feeling nauseous and I felt a bit more time in the bathroom was preferable to feeling sick.
Nintedanib is 1 pill twice a day whereas Pirfenidon is (I think) 3 pills 3 times so Nintedanib seemed a bit more practical.
Nintedanib is also the newer drug and I always want the latest thing!
Seriously though, there doesn’t seem to be much in it and I know some people have had the opposite experience.
Whichever you pick, you should be able to swap if it doesn’t work for you.
Good luck.
Hi Robin, I am on neither of these drugs as I am just above the threshold, I believe that Nintendinab are the drug of choice at the moment. I am just testing for a trial drug from a company called Celgene the trial is CC-90001-IPF-001 study you may wish to ask about this, it is a 15 month experiment which runs alongside your other drug use. I am only a guinea pig ask the experts...
Hi, I have been discharged from The Brompton with an amasing consultant Elizebetta Renzoni, she wants me to try one of these and has left the choice to me. I have selected Nintedanib
Morning
My Husband was on both medication none worked for him, Consultant Elizebetta Renzoni who you said is amazing, don't be fool by her smile. she has no ethic is how to let patient know that they are dying so callous way of saying she is no doctor with heart
please be ware and question and other treatment available they are only trying this drugs to FUND drugs company....I LOST MY HUSBAND
I am really sorry to hear of your loss, did your husband go on any of the drugs
Hello robin10
My husband was given Pirfenidone in his first year of diagnose that was in 2015, after year review they realised his condition progress and lost 35% lung function in that year , they then given him Nintedanib in 2016 after one year review his lung function droped capacity was only 15% left by now too late given him 6 month to live since September of last year, he died in on 2/4/18
He was also given Antibiotic called Doxycycline 100 mg and Azithormycine 250 mg to take in winter month. and Omerazole 20 mg
Pirfenidone gave him lots of side effect includes discoloration of his skin and weight loss, no appetite unable to go out in the sun
Nintedanib also weight loss no taste, he lost taste
i hope this help
Thank you. How old was he. I’m not sure what state mine is at. I don’t feel too bad and get little side effects if any from the drug. I do get breathless if I exert myself too much.
He was 72 years old did not qualify for lung transplant as was too old, you must ask your consultant of your lung function capacity, and get them to do test every 6 month dont leave it for whole year.
Nintedanib slow you down
Hi Robin. I will be starting on Perfenidone 3rd April, when I return from holidays. I can’t take the other drug as I am taking anti- coagulation. It will be interesting to see how we both get on. I’m a little apprehensive about the side effects, but as my lung function is now 60% , this drug will hopefully slow down the progression. Good luck !
Wendy.
I went on nintedanib no side effects at all at the moment
Been on nintedanib for about 9 months with 6 caps of carbocisteine plus 2 X 10mg zomorph side effects not to bad bit constipated , and find that if a take the all 6 caps of carbocisetine my mouth gets very very dry at night have cut it down to 5 a day it is a bit better, 5 years since scan discovered shadow on lungs , but I have got a lot worse this year slightest effort and I am absolutely knackered next visit to GUYs hospital Dec 18 , don't feel that nintedanib as made much difference, but then I am no expert,
sad to hear that, I am back at The Brompton in January I actually feel fine apart from my voice, towards end of day it goes very rough
I have read your posts with interest as I am also considering drug use and the benefits. My specialist has been reluctant to prescribe these drugs including Prendisone owing to the side effects. I am trying to weigh up the benefits against any loss of quality of life. I live in New Zealand where there is no spupport networks.
Good,luck,with your journey with IPF
How do you measure the percentage of your lung function?
The hospital will do a lung function test which will give you all the details about how your lungs are going on.
Robin if any of your replies is in difficulty reading ther lung function tests try googling it
its full of very good information Rodders
Robin hi , yes lv been on the same as you for the last month ,lv found lv had little or no side effects but this week l seem to have a altered sense of taste,other wise l feel it has given me peace of mind, hope you get on well with it .
. kind regards Rodders
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