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@bopsahl

I’ve also have ILD and there isn’t much for us people. If you have pulmonary fibrosis they have lots of clinical trials. I was in a pulmonary fibrosi trial and the last day ready to start the medicine they said that I had ILD. so no trial. The trial that I was to go in had Bextrograst for the trial and it had some good results. And I heard that they have used it for ILD. Mayo Clinic in Jacksonville FL. won’t take in new patients. I go to the gym 5-6 days a week and walk 30 minutes to 60 minutes every time I go. Plus I do some weights. But I’ve had my shoulder replaced and can’t do heavy weights. I’m doing an exercise program with Mayo in Minnesota and that is 12 weeks. I’ll be done next week. But if you know of any trials or anything else for us ILD people I would like to know. I walk on the treadmill and outside everyday. I’m doing from 5000 to 11,000 steps a day. I use oxygen at night when I sleep. It’s hard to believe that they can’t find something to help. My doctor in Florida is worthless.

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Replies to "I’ve also have ILD and there isn’t much for us people. If you have pulmonary fibrosis..."

Why is the Jacksonville Mayo not taking on new patients? If that's the case they should be able to refer you to another Mayo----what about Rochester. You are fortunate to be on the east coast as all up and down there are large Medical facilities at your disposal. Even in Georgia, there's also Vandy that has a progressive Pulmonary program. Find a new physician. Your "steps a day" are phenomenal! Keep it up!