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Insmed Incorporated Message Board

  • checksurshorts checksurshorts Mar 6, 2014 8:13 PM Flag

    NTM Patient Part 1

    Was in Arikace (Arikayce) study. Not sure if it was Arikayce or the big three that did it because she is a little vague. I think she finished with Arikayce in 7/13.


    "Four hours is about what it took when I had my screening done. It can take up to a month for you to hear whether you have been accepted or not. It is not determined at your local site, but with the company and your samples of blood, urine and sputum will be sent (or at least in my case) to the University of Texas for testing--which is also where I sent my sputum as the study continued. I hope that you are accepted. It is a very interesting experience and eye-opening as to the cost and time put into this type of study. They do ask that we not share much of our experience, so as not to influence your experience. That makes real sense to me, because they want each individuals reaction. Good luck."


    "Following diagnosis in 2007 my doctor prescribed the big 3 for 24 months. At the end of that time my sputum was negative and had been for several months (inhaled 7% saline is necessary for me to produce sputum). After 18 months off medication I asked to have my sputum re-tested--it was positive. There are nodules in the right lung and a small amount in left long--same as before. My doctor wanted to wait to start treatment as I was not really symptomatic. Instead we began a program of lung hygiene--Accapella, breathing treatments twice a day--ipratropium bromide followed by 7% saline. I felt fine, but a pulmonary function test about 6 months later showed a drop in lung function. So back on the meds where I remain a year later. The latest sputum shows positive for MAC and the catscan shows no change. After more research and another reading of the Thoracic Society Paper on NTM, I accept that I am one of the patients with chronic infection and probably will deal with this on an on-going basis. In fact my doctor had warned me of this at the end of the first treatment....."

    Sentiment: Strong Buy

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    • Part 2:

      "...I am now 72 and feel well. Have not had a respiratory infection for over 2 years--a benefit of good lung hygiene probably. Yes, I also have GERD and take prilosec every other day. Now if my arthritic knees would just cooperate. My advice, Lourdes, is try to keep yourself as healthy as possible and deal with the situation as it develops. Easier to say than to do, but try to stay positive and as well informed as possible. Good luck."


      "Just have to share a word of encouragement. I have finished my second two-year round of the drugs. The last few cultures have been negative and the ct scan today confirmed that my MAC is currently inactive. Who know how long that will last, but I am delighted by the news. I had two years between the two rounds, so I a m hoping for at least that long. Stay the course and hang in there, sometimes good things do happen. Good luck!"

      Sentiment: Strong Buy

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