I have had Stills disease RA since 1996. I have been on plaquenil since 2008 and occasional runs of steroids. In November, a flare-up started and I also had trouble breathing. In end of April I went on Methotrexate but before that I had a PFT done which showed I had 58% lung function. I was started on steroids, steroid MDI's and LABA. I was told I had severe asthma. They are now thinking it may be UIP. The LABA has caused SVT. So we are experimenting with other MDI's. Working with Cardiologist and pulmonologist.

I am an otherwise healthy male. I have just recently discovered that I have interstitial lung disease. I worked in a chemical plant in the early 70s. There I was exposed to Diatomatious Earth Dust used for a filter medium, Ammonia, and the ever present leaking Chlorine Bottle. I worked there for over 2 years before deciding that it was not for me. Unfortunately, the damage was done, and now my prospects do look rather grim. I have been given only about 5 years.

I have this but my insurance does not cover the meds for me. I do have home oxygen and I am grateful for that. It is defiantly getting worse and it feels like there are bricks on my chest so I can't breathe in. I have been on oxygen 2 1/2 years.

My 24 year old brother died if this disease. He had Hodgkin's lymphoma, which has about a 90% survival rate. As a result of his chemo meds and radiation therapy damaging his lungs he had to have ventilation and never got out of the ICU.

A friend's young baby has just been diagnosed with this and is desperate for help as it is all so vague. A biopsy is being done and there is talk of him being put into a bubble. I am trying to find out any ways of supporting them with information which is positive.

I discovered I had this disease in Jan. 2004 brought into the hospital Emergency. In the hospital for 3 weeks, released, put on prednisone, feeling better after a year, went back to work, about a year later, I felt the symptoms returning. I was still on low doses of prednisone so the doctors just monitored me. In Jan 2009 I felt much better and told the doctor I wanted to go off prednisone, (in hindsight, probably something I shouldn't have done) because now, a year later the shortness of breath is back, tiredness, weight loss, and the coughing . Which never did leave entirely. Seeing a new specialist now, he is not offering me much hope, he said a lung transplant may help, but I am really scared and never expected this to happen again, and so soon.

My mother is presently dying of this disease. She is 76 years old and we put her in the hospital with pneumonia on December 14th, 2009. Today, 12/30/09 it has been determined that we need to take her off the ventilator and release her spirit cause she is not coming back to us in bodily form. Her lungs have just given out. In retrospect, we can see the signs on the wall. She was short of breath, but we thought she was just out of shape. We didn't even realize that she lost 30 pounds in the last 16 months. She fought this disease on her own even though she didn't know she was fighting it. She was strong till the end...loving us all so much. We will know how to recognize it in the future, but according to today's research, there is still no cure. Mother lived the last few years of her life as she would have wanted to...with us, but a bit short of breath, but still with us. We love you Nana.

I have been told that I have interstitial fibrosis. I am 44 years old with three kids and my first grandson. I have lost my job and my insurance I am a single parent. I am detoxing my self with acai berry juice. My friends and family give me support. I am not ready to die. I have been trying to get into a research center hopefully one will come along. My advice to anyone with this, “don't give up.” I want to be at all my grandson games he has in his future.