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Joan explains why she feels healthier today than the day she was diagnosed with pulmonary fibrosis and recalls the drug trial she is participating in.
Joan:
Today I don’t feel any worse than I did the day I was diagnosed. In fact, I really feel better and the reason I feel better is because I have lost weight. I have lost 25 pounds. I am working on the second 25. I walk at least two and a half to three miles every day. If I can’t walk outside, I walk on a treadmill.
I am also trying to do, because there is so many things that can go wrong, I wanted to get on some drug trials so I am on one. The drug I am on right now is Bosentan. It has been approved for people with pulmonary hypertension but they found that it also helped people with this disease. So in order to be approved by the FDA, it has to be tested and the testing has ended, but now I am in what they call the post-clinical trial.
I am continuing on the drug. We will know some time in March whether I am on the real thing. If I am on the real thing I have the option of continuing because it showed a little bit of promise. If they determine that it didn’t help anyone at all then they will discontinue the study completely and we will have to go and try to find another drug.
They also do not have enough people for the clinical drug trials because if you are on one you can’t participate in the other one. I got into this drug trial on a fluke. They had opened it back up because so many people dropped out of their drug trial. They needed to have 600 people finish the drug trial and so my question was, “Is this drug so toxic that it’s making the condition worse or they are dropping out because they are so ill?”
The reason they dropped out is because they died, and it allowed me to get into the drug trial. So I was in it for 14 months before it stopped, but I am still taking the medicine and I will know next month whether it’s a true drug or whether it’s not.
View More Videos On Idiopathic Pulmonary Fibrosis:
https://www.empowher.com/condition/idiopathic-pulmonary-fibrosis
Learn More by Visiting the Pulmonary Fibrosis Foundation
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