A story of a wonder drug,: As I live... - British Lung Foun...

British Lung Foundation

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A story of a wonder drug,

Servicer profile image

As I live in Broadstairs have been Under treatment from guys hospital horrendous stories of the journey particularly coming home average time out of the house to keep a appointment using G4S 12 hours not unusual To take 7 hours or longer to get home at about 11 PM so had to tell guys that l would no longer be able to make the Journey without A continus supply of oxygen , as a result my prescription for NINTEDANIB the so called wonder drug that in the USA cost approx 200 thousand dollars a year, just stopped without a word been without it now for two weeks or more l wonder if it was doing any good , ps I am virtually housebound now leaving at 7 L 02 at rest Personally I don’t think that there Nintedanib did me any good at all,

8 Replies

Sorry to hear of your trials and tribulations .as you probably know there are two drugs currently used in IPF, pirfenidone and nintedanib. They both slow down the development of scar tissue in the lungs of people with IPF.i have seen trials where a combination of both have been proven to be beneficial for some people,perhaps worth a discussion with your consultant,My wife had IPF but being a stroke sufferer she was offered neither so i can not help with how she reacted to nintedanib but others on this site with IPF may be able to give you their experiences.

Best wishes Ski's and Scruff's

Hi Servicer,

I dob’t suffer from the same condition as you but just want to wish you well as part of our BLF family.

Love cx

They stopped your nintedanib without a word because you said you couldn't make that long journey? That was a really long day out and not unreasonable for you to say you can't manage it without oxygen. It seems crazy they just stopped the medication. Theirs isn't a very helpful attitude. Perhaps it would have been more beneficial if they'd offered you advice or help so you don't feel housebound instead of them seemingly going off in a huff.

Best wishes to you.

How sad for you, could you not talk this over with your gp to find a solution. Maybe the blf site could help, perhaps give them a ring and see what they suggest. Do you have friends/family that visit? I do hope so, if your housebound, visitors are vital. Wish you all the best and keep us updated on the site. Irene x

Dedalus profile image
Dedalus in reply to Izb1

This is pathetic -stopping the drug because you can't get there in person. There must have been other ways/places you could be monitored. I find this attitude totally unfeeling and arrogant; they are definitely in the job for the money only as there is obviously no caring. I think you should, at the least, complain. Good luck

Izb1 profile image
Izb1 in reply to Dedalus

Totally agree x

Yes,I'm in agreement too! Complain....their actions to stop your prescribed drugs at the drop of a hat,is beyond belief my friend! Please do not leave it like that.

That sounds like some faceless office jobsworth has done that, surely your consultant wouldn't approve, so maybe give his secretary a ring to find out. I understand that some, probably most, GP practices won't or can't prescribe very expensive drugs and these then have to be prescribed each time at the hospital, in these cases it is usually normal for an ambulance service to be provided with oxygen etc. Can you access this service for your hospital visit, or is it not available? it's a helluva bad situation without help.

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