PIRFENIDONE

[Joneswm]

CanI ask if anyone is taking Pirfendone for IPF, and if so, how soon does one begin to feel any improvement ?

Thank you

Wendy.

[asfaan_abs]

Hello Jonesswm

My husband was prescribe Pirfendone when he was diagnose this horrible illness in 2015 it did bot help him they are many side effect ie not allowed in sun also lost weight, but then again its on individual how it effect them he tried this medication for one year but his condition progress then he was allowed to go on Ofev for another year both did not help his condition deteriorated even more he then stop taking it all together, went for stem cell treatment that also did not work,,,,good luck with the Pirfendone and eat healthy

[Joneswm in reply to asfaan_abs]

Thanks for your reply. I hope I can tolerate it long term, just going into my fourth week. No real side effects as yet, but do feel bloated a lot of the time and can’t finish my meal, but not losing any weight as yet !

[bubbles8528]

Hiya . I was on Prefenidone last year. I know everyone one is different but i was so poorly on these with side effects that i am now on Nintenadab which i seem to be tolerating . The only side effect i seem to have is tummy ache. Are u ok on prefenidone (no side effects)

[asfaan_abs in reply to bubbles8528]

Hello

It was my husband who was on Prefenidone which did not work on him he lost lot of weight and discoloured his skin tone he was then put on ofev Nintenadab also gave him side effect on loose motion and lost taste bud, did not worked at all and his condition worsen.

I wish this medication works and anyone with IPF get all the help that requires and health care professional should put more effort in research

[bubbles8528 in reply to asfaan_abs]

My conditon is still worsening even tho im on medication i had those side affects with both tablets. I can cope with loose stool and tummy pain but couldnt cope with perfenidone side effects. I dread to think how much quicker i would deteriate without nintenidab . We know with this condition it isnt goin to get any bettet .

Best Wishes

Karen x

[asfaan_abs in reply to bubbles8528]

This tablets are only as trial, it works on some, it did not work on my husband he deteriorated very quickly lost 35% lung function yearly lots battle in 2 years

The Royal Brampton hospital is good but they don't educate you as how this medication will help and what other help available if this does not work they told my husband be frank you have 6 month to live and they can't help him any more it was blunt ...sorry too old for lung transplant and would not live very long

What i would like to say is be positive eat healthy and stress free and ask question any help available please take and enjoy your life

one more question what stage are you?

[bubbles8528 in reply to asfaan_abs]

Im so sorry about your husband luckily my consultant and specialsed nurse are amazing . I have 58% lung function having hernia op in prep for my lung consultation in Manchester soon but nd to loose weight first so joined slimming world and gp referral gym xx so fingers crossed xx

[asfaan_abs in reply to bubbles8528]

my fingers are crossed for you

[Joneswm]

Hi bubbles. I’m on anti coag so unable to take Nintenanab. I’m ok at the moment, minimal side effects, bloated tummy and unable to finish meals. I’m drinking lots of water. My taste buds seem to be redundant too. I am also more tired than usual. I’m off to see my local Consultant today, so I’ll have a chat with her. Not due for my Stoke follow up with the Professor until the beginning of July.

Thanks for your reply

Wendy.

[bubbles8528]

Good luck keep in touch xx

[CMK105]

PERFENIDONE only controls the disease progression