Has any one used perfeniodone for IPF

[gerry1950]

[peege]

Hi Gerry I'm sorry I cannot help, I don't have IPF but someone will be along soon to help you. All the best

[gerry1950 in reply to peege]

Thanks

[Hidden]

I haven't I'm afraid although I did go to Royal Brompton to see if it was appropriate for me. As my FEV wasn't below 80% it isn't suitable for me as yet. There are several members on the Facebook Group 'Pulmonary Fibrosis UK' who are though so if you use Facebook it may be worth you joining that Group (it is a closed Group by the way).

[Hidden]

I have been on perfenidone since April 2013. I was diagosed with IPF in 2008 and the last year or two it has got a lot worse. The consultant said I would not feel better with perfenidone but it is supposed to slow down the formation of the fibrosis. It is impossible to know whether that is happening or not. I am monitored with blood tests and breathing tests monthly but I don't really know what they show. I have not had any significant side effects. I am more breathless, and much more fatigued but I have no idea whether these are caused by the perfenidone. I also have a bad cough which sometimes brings up vast amounts of phflem - sometimes my cough seems so weak I have difficulty bringing anything at all up. My apetitite is also poor and I am losing weight.. I have to use factor 50 sun block every day to stop a rash, this seems to work. I have a consultant appointment in Exeter 2nd Sept. so I am hoping for a bit more feed back then.

Sorry I don't seem to have anything positive to report but I am pressing on with the perfenidone as it does seem to be my only option.

[Hidden in reply to Hidden]

Good luck with your next appointment silvertrier. Do let us know how you go on.

[Hidden in reply to Hidden]

Yes I kept my appointment in Exeter on the 2nd Sept. Respiratory tests showed FVC was 1.04 64% predicted. Dr. Gibbons was quite pleased with this. He thought the Pirfenidone was slowing down the fibrosis a bit. I am constantly breathless and tired but he said this is the disease and not caused by the Pirfenidone. I am continuing with monthly blood tests, breathing tests and consultants appointments, alternating between Exeter and Barnstaple hospitals.

Positive is I have had no side effects. It does seem to be our only option at present.

There are new clinical trials starting for a drug called SIMTUZUNAB. Aim for this one is to actually dissolve the fibrosis but the trials are only at 2nd or 3rd stage yet. I have looked at it and asked my GP what he thinks. The snag from my point of view is the need to come off the Pirfenidone for a couple of months before starting the trials, and then you might only receive a placebo because the trials are at an early stage. For anyone not on Pirfenidone it might well be worth looking into but there are criteria to meet. It is all on the website which I was able to access through Google..

[Hidden in reply to Hidden]

That sounds optimistic for you. I hope you continue to have no side effects. I will look into the other drug you mentioned. Don't know if you are on Facebook at all but there are loads of IPF groups on there giving support and information too. IPFtoday.com has info on many trials etc. Let's just keep hoping. Take care.

[Hidden in reply to Hidden]

Quick correction - the drug is SIMTUZUMAB. They aren't recruiting in UK yet but I will keep an eye on it. Thanks.

[gerry1950 in reply to Hidden]

Thanks for your reply I have got worse over the last two years I was diagnosed with hypersensitivity pneumonitis in dec 2009 and I had. All sorts of medication and treatments so I will just keep taking the pill and hope for the best I have not taken perfenidone yet

[liftman]

Hi gerry, I Have been suffering from pulmonary fibrosis since 2005 and like you I have been on different pills .I found going to a gym with a medium pace on the walker and bike( 15 mins on each) and attended a Rehab course at Musgrove hospital ( Taunton, my town) helped. .dont have any info on Pirfenindone or simtuzunab but will see what I can find out from my GP & Consultant. Keep positive and in touch , Terry..