Pulmonary fibrosis

[Loubylou73]

Hi my Mum has just been told she has phelmonary fibrosis and is about to go one the medication Perfenidone (not sure about spelling) can i just ask about side affects that people may of had and is it true that she wont be able to sit in the sun no more .. many thanks.. a worried daughter x

[peege]

Hi, very sorry about your mum's diagnosis - what a lovely daughter to go looking for help 😃

I'm afraid I know little but I'm sure others who do will be on in the morning. In the meantime, you could write pulmonary fibrosis in the search bar & see what comes up . Then write in perifidone in the search bar - not sure about the spelling either!

[Hidden]

Hi the do say your burn easy in sun BUT think this more to it than that.

But steroids are very good and given my issues I would not hesitate when my doctor prescribes em.

[Billybob10]

Hi,I have same thing(IPF).I'm on perfenidone.Only one reaction was slight appetite loss -not serious.Was given Oxygen help but have now found that Buteyko breathing helps dramatically.Check it out! Good luck!

[ruthhealy]

My husband was on that for years . He just used factor 50 suncream and he was fine. Went to Florida , Cyprus etc so no problem , but everyone is different so see how it goes . Love to your mum xxx

[Helen6]

Hi Loubylou, I have IBF and used to take perfenidone. I stopped taking it because of continuing nausea. Stomach problems are common with this drug but not everyone is affected. Perfenidone does make your skin sensitive to sunlight and I was advised to wear sun block at all times. I didn't experience any skin problems but I wasn't taking it during the summer.

Best Wishes,

Helen

[TOMMYBOY1]

IF IT IS "PREDNISONE" YOU ARE REFERRIMG TO, I HAVE BEEN TAKING A 5 MG TAB EACH DAY FOR THE PAST 7 YEARS. I GUESS IT HELPS MY BREATHING SOME HOW, BUT ONCE YOU START, IT ISN'T EASY TO STOP. I STOPPED ABOUT A YEAR AGO BECAUSE I DIDN'T FEEL I WAS BENEFITTING FROM THEM. WAS THAT A MISTAKE. MY ENTIRE BODY WENT INTO ACHES AND PAINS AND STAYED THAT WAY UNTIL I RESUMED TAKING THEM. AS FAR AS THE SUN, I HAVE NOTICED THAT MY SKIN DISCOLORS WHEN I SIT IN THE SUN NOW, THAT REALLY IRKS ME BECAUSE I HAVE ALWAYS BEEN A SUN WORSHIPPER. GOOD LUCK TO YOUR MUM.

[Grampy16]

I have pulmonary fibrosis and am on that medication also known as esbriet I take 9 267 mg every day with food and have to apply spf50 and keep covered up from the sun I have been on the med for 2 yrs

[Loubylou73]

Thank u everyone for your replies xx nice to speak to you all knowing you know what i am talking about xx