IPF - new meds approved in EU

[jenss]

lungdiseasenews.com/2015/01...

[IPFsufferer]

I think it is a bit late for me -

..................The INPULSIS® outcomes revealed that nintedanib slows the disease’s progression and that it reduces the annual rate of decline in lung function by 50 percent in a large variety of IPF patients, such as those with early disease, ....................................

Too bad!

[jenss in reply to IPFsufferer]

Hi there good to hear from you. Well, "such as those" doesn't mean exclusively those, but maybe you are right.....I am very sorry if it is the case . Anyhow, I recall you are seeing the specialists soon, you could ask what their view is on that..... Best wishes, take carexxx

[Hidden in reply to jenss]

I agree with jenss is being prescribed and is no reassion why you have to wait

Am more vocal so would surgest giving ya GP what for personaly

[IPFsufferer in reply to Hidden]

I am far too late. I cannot leave the house and all agree that I am now in the final stages. My lungs are so shot that the slightest exercise, standing up, will knock my sats down to 61-65%, even on 15 lpm of O2. The ONLY thing that helps is the Oramorph......

[jenss in reply to IPFsufferer]

Hmm so sorry to hear this. So no more visit to the specialist, no point? Thinking of youxxx

[Hidden in reply to IPFsufferer]

Hi IpfSufferer

Am so sorry to read that wish i knew something tangable that would help

Only thing i know is nintedanib like others av said i cant underrstand why it wont be given early

Did read you have to watch bp with is so surely is better of given early to save on complacations

Did read it dose reverse lung damage but not by a great deal is it not at least worth giving it a try

[sassy59]

Interesting article jenss and should bring hope to many. Sadly of course not everyone will benefit but it is a step in the right direction for such a terrible disease. Lots of love, Carole xxx

[Hidden]

You never know IPF do you? Don't forget that despite its low priority new drugs are being found or new uses for old drugs. This has been ongoing for many years and you must have benefited from this yourself in the early stages of your illness whereas others before you wouldn't have x

[IPFsufferer in reply to Hidden]

In my 14 years the ONLY treatment I have has was prednisolone from 2001 to 2004!

[Pianosop]

Thank you for posting this. I'm seeing my consultant on Friday and will ask her about it. Bit of hope.

[tedchester1 in reply to Pianosop]

Interested to know what your consultant said. Have you been prescribed this yet?

[Pianosop in reply to tedchester1]

I've not been prescribed this. I'm in Scotland. I'm in the early stages of interstitial lung disease. I'm seeing the consultant every 3 months to be monitored but no medication at all. I've tried Prednisolone, Azathioprine and Carbocisteine. None of these have had any positive effects on my condition and the last two made me feel awful sick and dizzy.

[jenss in reply to Pianosop]

Hi thought I'd point out a support group for PF to you. Members are from all over the world and have PF due to various diseases. There are many who have been on medications specific to PF.

inspire.com/groups/pulmonar...

[Pianosop in reply to jenss]

Thank you for this. I'll look into it.

[tedchester1]

Has anyone been prescribed this treatment yet? Would be useful to know and also to find out about any side effects. We are in Scotland and are hoping that this will be available up here too.

[jenss in reply to tedchester1]

Hi tedchester,

check out this support group for pulmonary fibrosis. There are lots of people on there that have taken part in clinical trials for these two and other meds, and lots who are being prescribed these two meds in the US. They are great in sharing their experiences of the meds. Best wishesxxx

inspire.com/groups/pulmonar...

[tedchester1 in reply to jenss]

Thanks Jenss. Yes, I've joined that community too.