IPF

[Marm]

Just been diagnosed with this condition and prescribed azithromycin and nacetylcysteine. Any advice would be most helpful as I don't know anything about the progress of this disease

[Athar]

Hi Marm

The BLF recently held a webinar on this condition which you can watch here

youtube.com/watch?v=EMvoGAv...(Not working as expected?)

and we have additional online information here

blf.org.uk/Conditions/Detai...

and we have a free publication that you can order from here

blf.org.uk/Publication/Deta...

and of course, you can call the BLF helpline on 03000 030 555 for ny other questions or advice. it is free from most telephones

blf.org.uk/Page/Helpline

Hope this helps

Athar

[tanyamarie]

Its a brilliant video and very informative. Alot of specialist can give different advice regards prognosis and one can conflict the other. The best advice I can give you is to find a very good specialist who really knows their stuff regarding IPF and not just COPD. Big difference in the two and how to treat them.

Also, it is worth having second opinions from different specialists because their treatment plans can vary drastically. It is your life and please don't be afraid to ask as many questions as you need to as many people as you want to. Even most specialists will find it hard to disagree with the fact that they are finding new things out about IPF and sometimes don't know what to do themselves because so little is known about it.

I wish you well x

[Hidden]

Hi Marm!

I too have IPF and it was diagnosed in 2009. From my own experience, not many GPs or even consultants know a great deal. I think it is difficult to generalise on how quickly it will progress. If you look at the average survival rate it will probably just scare you but you have to bear in mind that it is ONLY an average.

I was seen at my local hospital and more or less told there was nothing they could do, here is a leaflet, come back if you get worse! My family and I weren't prepared to "just give in" so arranged via my GP to have a second opinion at the Royal Brompton.

I had various tests, including CT scan, and will be returning for more, including Bronchoscopy, in the next few weeks. As soon as I have more information I will write a blog and post on here so keep an eye on the site.

The main thing is to TRY to keep positive. You are just the same as you were before you received the diagnosis only now you have a label attached to it! Live life to the full today!

XXX

[Marm]

Thank you for your help and advice. I've had cat scan and breathing test but will be having a full breathing test (whatever that means) on 18 Feb. The consultant admitted they couldn't give a prognosis as they do not know how it will develop. I've not had a chance to see my GP yet but it is a very good practice and I will ask questions when all tests have been done. You're right about being scared when reading about survival rates and I was very depressed when I first read them but I've decided I can't alter things so do what you said and think positive!! Thank you all again your kind comments

[buddygirl]

Hello Marm,

I have IPF there isn't many of us on this site mainly COPD I was terribly depressed when it was laid out my survival of years and kept crying for months in shock, but it is a waiting game the doctors really don't know too much my GP surgery haven't been much help. If there is anything you want to know please ask, I am going into my 10th year yes I am a lot worse all the disability gadgets, just try and enjoy your life the drugs a available do slow it down.

[Marm in reply to buddygirl]

Thanks Buddygirl, just to hear how long it is since your onset of ipf gives me hope. I was convinced two years was my limit. Good luck with your treatment

[Ozzygirl64]

I do not know much about IPF so I will watch it and learn xxxxx

[Mavary]

Hi! I am here for my Husband who has IPF. When it started about four or so years ago the Drs thought he had Bronchitis first then Bronchiectasis. It was when were on a cruise that the ships Dr heard crackling on his lungs. He even let me listen to it. My Husband had gone down to see him for a very bad back. I mentioned to him about the cough he had and that is when he listened to it. He wrote back to my Husbands Dr and said would they let him know the outcome. I wonder if he guessed then what it was. We were sent back to the Specialist whom we had been seeing and all of a sudden it dawned on him what was wrong. Anyway he stayed fairly stable for three years. He had an infection the beginning of this year and ended up in hospital where they discovered he had two blood clots. He was put on Warfarin for eight months. Since having that he has not been too good. A couple of weeks ago he was put on oxygen for when he walks anywhere. He has in the last couple of years had pneumonia and been in Hospital. I'm sure everyone's story is different so you can't go by one person but this is my Husbands story.