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Insmed Incorporated Message Board

  • checksurshorts checksurshorts Sep 13, 2013 5:03 PM Flag

    From NTM Forum

    This post is from ntminfo dot org. I won't post the screen name because you need to sign up to view. This is of course just one persons experience so keep that in mind. I hope this is a viable option for these patients.

    "Negative at last

    Just thought I'd share the fact that, at the end of my trial on Arikace, my sputum tested negative. That's the first time in 4 years I've ever had a negative result! Woohoo!

    --------------------------------------------------------------------------------

    Edited By: xxx
    2013-09-10 16:57:45"

    "Re: Negative at last

    If things continue to go well with others on the trial, maybe they'll fast track the drug so more people can see if it works for them. So wonderful to have another option when the Big3 don't do the trick. Thanks for all the "congrats""

    Sentiment: Strong Buy

    SortNewest  |  Oldest  |  Most Replied Expand all replies
    • There is a wealth if good information on this site. I strongly recommend reading through all of the posts that contain "Arikace." Several individuals who took part in the trial had strongly recommended for others to get into the trial. It does take some reading between the lines, though, perhaps due to this:

      "...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."

      One point of interest in the "Negative at last" post at the top. That patient recognizes that she only received Arikace during the 2nd half of the trial and then still ended with this result.

      Looking forward to the results.

      Sentiment: Strong Buy

    • It's pretty compelling that this innocent thread that shares helpful DD received so many thumbs down recs. I had forgotten that the board had a few weeks of negative bot recommendations.

    • Bump

      Sentiment: Strong Buy

    • checksurshorts • Sep 13, 2013 5:03 PM Flag
      7users liked this postsusers disliked this posts99Reply
      From NTM Forum
      This post is from ntminfo dot org. I won't post the screen name because you need to sign up to view. This is of course just one persons experience so keep that in mind. I hope this is a viable option for these patients.

      "Negative at last

      Just thought I'd share the fact that, at the end of my trial on Arikace, my sputum tested negative. That's the first time in 4 years I've ever had a negative result! Woohoo!

      --------------------------------------------------------------------------------

      Edited By: xxx
      2013-09-10 16:57:45"

      "Re: Negative at last

      If things continue to go well with others on the trial, maybe they'll fast track the drug so more people can see if it works for them. So wonderful to have another option when the Big3 don't do the trick. Thanks for all the "congrats"

    • New post:

      "Xxxx, I am continuing with the Big 3 for now because we don't know how long the benefits of Arikace will last and we don't want to give the bugs a chance to regrow. I also recently was diagnosed with pseudomonas and hope that the 2 week dose of Cipro will help (by the way, I'd had Achilles tendonitis with Levaquin, a sister drug, but since Cipro is really our best option for pseudomonas, I decided to risk it and did fine.) As part of the Arikace trial, I return in February and will probably stay, at least for a while, on a twice a year visit schedule at NIH. In February they will advise me re. continuing on the Big 3 -- but I'm kind of guessing that, since I tolerate the meds really well, they're going to keep me on them.

      Basically, we all have some form of COPD...I've got touches of emphysema (not serious), some pretty significant bronchiectasis, Alpha 1, etc. I do not take the Alpha 1 transfusions and my O2 rate is great. I work out, play tennis and walk 18 on the golf course regularly, and my MD at NIH said that the activity level is the best thing I could be doing to combat the bugs.

      Hope this helps. Xxxxxx"

      Sentiment: Strong Buy

    • New post from same member:

      "xxxxxxxx, I have run of the mill MAC, but also have Alpha 1 antitrypsin disorder and bronchiectasis. And thanks everyone for the well wishes...I am so excited that, at least for me, it seems like Arikace was able to achieve what the Big 3 couldn't. Can't wait til it's more widely available."

      Sentiment: Strong Buy

      • 1 Reply to checksurshorts
      • Are there any posts from M. abscessus patients? That one is a much nastier bug than MAC. From the quote below, about 25% of the trial patients have M. abscessus infections, 75% have MAC.

        From the 2013 Q2 conference call (Seeking Alpha transcript):

        Unknown Analyst

        Sounds good. And so, also, what kind of breakdown do you expect between MAC and M. abscessus-afflicted patients? And is this something that you're stratifying and balancing the proportions of between drug and placebo?

        William H. Lewis - Chief Executive Officer, President and Director

        Right. So again, a great question. I think we do stratify for the difference between MAC and M. abscessus in patients coming to the study, as well, I'll just note, for CF and non-CF patients. The breakdown between them is not inconsistent with what you see more broadly. I think perhaps a little bit more abscessus only by virtue of the fact that these patients that are coming in are severe refractory patients. So these are folks that have been on ATS-IDSA Guidelines and still with this multi-drug regimen for at least 6 months prior to screening, are showing persistently positive mycobacterial culture. So with that as a backdrop, they come in. I think, we've quoted in the past that we are giving about 1/4 of the patients or so with abscessus, and the balance with MAC. And of course, all of these patients come with co-morbidities that include things like CF, but also include non-CF bronchiectasis, COPD, et cetera.

        Sentiment: Buy

    • #In discussions with the FDA#the tradeoff was agreed#FT QDIP will shorten from 3 to 2 years#from my ear to the floor#A phase3 trial will be required for NTM

    • How does a good post like this get 99 downs? Is robojerk gone?

    • Check out the site. Good info. GLTAL's

      Sentiment: Strong Buy

    • You never can argue scientific tests. No spin on this fact is possible. Good luck y'all!
      GT

      Sentiment: Strong Buy

 
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