Perfenidone

[Sooki]

Are any ipf sufferers on this drug ,has anybody suffered any side effects.I know it was prescribed on a named patient basis and is due for general release in June.Any info please.Lindy

[Hidden]

I enquired about this last year but my GP had never heard of it and said even if he had he wouldn't be able to prescribe it because of cost! I then asked local consultant who more or less said the same, so I then referred myself to Royal Brompton for second opinion.

They said they were awaiting NICE decision but that I shouldn't dismiss the possibility if I proved suitable. Since then they have done loads of tests & I get the results of them all next week so .........watch this space!

Will be interested if you find out anything.

[Sooki]

Nice approved use of this drug in April,there was info on the Internet,it should be available for prescribing from June.It has been available on a named patient basis,I am waiting to go to Papworth ,as I asked my Gp to refer me although I live in Birmingham.Papworth have arranged to talk to me next Wednesday.I believe from the research I have done that Papworth and the Royal Brompton are the 2 centres of excellence.Us ipf sufferers need to fight for the best treatment available,not many people know much about this devastating disease,I know because my mum had it,although she was 80, I am just turned 63 and am finding it difficult to come to terms with having a terminal disease.,Although this is a good site,there doesn't seem to be much info for us sufferers.I will keep u informed when I have spoken to Papworth.let me know how u get on with your test results,would be interested to know what tests u had.Lindy

[Hidden in reply to Sooki]

Hi Lindy,

Those I can remember: Echo-cardiogram, High Resolution CT scan, 6 minute walk test, overnight SATS observation, extensive lung function tests, arterial blood test, various other blood tests for goodness knows what, bronchoscopy & bronchial lavage plus the usual temperature and blood pressure checks. I will give you an update maybe via a blog when I have all the results. Meanwhile if you want to ask anything else feel free to personal message me. Do what you can when you can and try to keep smiling.

Syl.

[Sooki in reply to Hidden]

Hi,I have now had chest x ray and breathing tests done at Papworth,pretty much confirmed what I already knew,off again next week for 6 min walk test and ct scan,,doctor said depends what ct shows,if I have to have biopsy,hope not,I will then be passed to the ILD specialists who will decide treatment,including pirfenidone ,as I am on the mild to moderate scale.,I have been impressed with Papworth,they do the tests ,give u the results and then straight in to see the Dr.They know I am travelling from Birmingham and give me time to do the travelling.Meanwhile I had ultra sound scan for pain I was getting abdomen and right side,thought it may be reflux meds not suiting me,as if IPF news wasn't enough the scan showed a 32 mm stone,so now I have to see consultant in June,will use Birmingham hospital for that.Went for my regular eye test last week,now detected cataracts starting.Gods truth I thought 5 months ago I was a pretty healthy 63 year old,how wrong can u be,all because I had niggly cough.Hope u are getting somewhere with your request for pirfenidone , how are things with u.Lindy

[Hidden in reply to Sooki]

Hi Lindy!

You are having a rubbish time aren't you? If it's any consolation, I have had cataracts removed from both my eyes and everything is now like HD!

I went to Royal Brompton a couple of weeks ago & results were fairly positive. They were able to confirm that I have IPF and IPPFE but I seem pretty stable at the moment and my lung function is 88% and has not deteriorated much over the past 2 years. Apparently Perfenidone would not normally be considered until it dropped below 80%. However if I do deteriorate they would consider prescribing it.

For now though I have to continue with Omeprazole for acid reflux and Acetylcysteine (NAC) for IPF and if I have even a hint of any infection I need to start antibiotics immediately. I also take a co-codamol at night & that seems to suppress the cough sufficiently to allow me to get some sleep.

I do hope things start to improve for you soon & hope your results from Papworth are hopeful. Take care.

Syl

[Sooki in reply to Hidden]

Hi Syl,have had ct scan and walk tests and flight test.CT,scan confirms fibrosis and also showed significant emphysema ,I will now be referred to ILD team at Papworth,who will decide on whether to do biopsy and what treatment I should have ,Had to pay nearly £150 for 12 days insurance cover for a holiday ,looks like being ill will put paid to any more holidays abroad at that price per holiday,this is a special holiday 40 Year anniversary last October,but was helping my son and my grandchildren settle in the USA,wonder if I will be able to go again.Hope youI are doing ok what is IPPFE, I take Manuka honey+25 for my cough it does help,it also helps the immune system ,a friend mentioned that my ough seemed better,so perhaps it does work.Linda.

[Hidden in reply to Sooki]

I hope you get your Papworth appointment soon & they can get you on some effective treatment as soon as poss.

The holiday insurance is rubbing salt into the wounds isn't it but if you can manage to afford it and feel well enough you should go on as many hols as you can whilst you can.

.I am not doing too badly thanks.

" Idiopathic pleuroparenchymal fibroelastosis (IPPFE) is a recently reported group of disorders characterized by fibrotic thickening of the pleural and subpleural parenchyma predominantly in the upper lobes. " - well you did ask! :-p.

Basically this has knackered the upper lobes & the IPF has knackered the lower lobes so if they meet in the middle - well lets not think about that one! Maybe they'll call that IIPPPFFE hahaha.

I am doing my best to ignore it and carry on as "normal" whatever that is.

I find that just half a co-codamol at night is enough to stop my cough so I can get some sleep but I may try the honey too. Thanks for the tip. Take care! Syl