Oxygen isn't that bad. Sleep with the concentrator plugged into the wall. You can get around outdoors with the portable oxygen concentrator (POS). You wear it on a bag on your shoulder. Look around at the grocery store. I bet you'll see two or three of them. I wear mine like a purse strapped across my body. It isn't bad at all. I'm 63 so I'm not as vain about using it as I might have been when I was younger. There isn't a cure, but you could possibly take meds that will stop the progression. The one I checked into was Esbriet. I am willing to try but I need to get approved for a grant or some kind of trial. Good luck to you. Fighting is a good idea. I think you have the right attitude.

No, I have Hypersensitive Pulmonitis, but I have some scarring and am in oxygen 24/7.

first person i have seen on this web site that had hypersensitive pneumonitis, that i was diagnosed @Mayo in Scottsdale in 02. treated with prednisone couple yrs and for ten yrs perfectly clear. then 10 yrs later ipf. i have been dealing with it for 6 yrs. i have been using Esbriet 6yrs and it has been very effective! but i use 4-5 ltrs oxygen 24/7 very little excercise because lack of stamina.i am also 80 yrs young.belive in Esbriet get off prednisone!

correction on Esbriet 3 yrs.

Hello, you can get In touch with Esbriet at 844-372-7438. Also go online to Genentech-Access.com/Esbriet. You are virtually assured to get a grant or help paying for this drug! Also your doctor should give you the packet of information supplied by the pharmaceutical company.
Hope this helps

I was diagnosed in Jan., 2013. About the middle of 2016, I started having fatigue and shortness of breath. No difference in my scarring - Dr. said it was in upper lobes and IPF was in lower. Saw my new pulmonologist in October, and was told to go on oxygen at night. Now I am on o2 24/7. Have Bronchiectasis and some COPD. I take 10 mg. Prednisone daily, as well as nevulizer and mucinex. I try to exercise regularly, but I have not been offered Esbriet or Ofev. I am almost 70.

I was diagnosed about 2 years ago with IPF. I was on night time oxygen immediately and as needed during the day. I did okay until a few months ago when I got a sinus infection that will not go away. I can not breathe through my nose and end up gulping air. After further testing I discovered that my immune system is so bad that I have to have weekly injections of antibodies from other people. I am almost 80. I am hoping that the treatments will make my immune system strong enough to fight off the sinus infection. Has anyone else in the group had a similar situation?

What will prednisone do for ipf ?

Sorry I’ve gotten worse fibrosis in the last year and a half twice

My husband has severe IPS and is on oxygen 24/7 He tries to go without it but becomes out of breath very quickly when he leaves it off. We were able to get a portable oxygen unit but it is still awkward to try to juggle a ane and oxygen so he finds going outdoors very difficult. His biggest complaint is weakness and dizzy. I have tried and the Dr.has experimented with drugs to try and find a reason for the dizzy but so far nothing. I would be interested to know if any other IPF patients experience this and what do they do about the dizzy feeling.