IPF

[Looseloafers]

The only thing I have for breathlessness is Ultibro. What else helps? It’s starting to get me down a bit!

[annienell]

Hello, I'm sorry you're having problems with breathlessness that you can't relieve. I'm not surprised it's getting you down!

I'm afraid I can't advise on this, but the friendly people on the BLF Helpline (03000 030 555) will be able to. Please call them and I'm sure their experienced nurses will have suggestions as to what you could be saying to your GP or respiratory team to get the help you need.

Best wishes, Annie

[Ian1369]

You need to see a specialist lung consultant for a proper review of your condition. There are new anti fibrotic drugs on the market that can slow down the progression of the disease. You can only get them if you qualify on the NICE guidelines and they are only dispensed from specialist centres. Have you had a recent oxygen review. I find Oramorph helps with the coughing. I don’t know anything about the ultibro never heard of it or heard it being spoken about by my transplant team. Try and stay positive ( I know how it feels) and stay as active as possible as that keeps the lungs flexible even if like me you only have 30 % capacity it does help. These pages are a great source of information but you need to discuss issues with the medical professionals to see how they can assist you during this journey into the unknown.