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Thread: taking Ivacaftor?

  1. #21
    Junior Member
    Join Date
    Sep 2016
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    10
    Hi, thanks for your response Jricci! We are still waiting for the pre authorization and insurance "stuff"
    It is frustrating and I am patiently and anxiously awaiting answers. I pray that Kalydeco is my daughter's miracle! The nurse at her clinic said that they do not do any testing or anything to "see if it's working." She said that if I ask for a sweat test that it is possible to get. The process isn't going as quickly as I wanted but I'm thankful for the health she has.

  2. #22
    Junior Member
    Join Date
    Sep 2016
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    16
    Hi! I just wanted to add an interesting detail that Vertex presented during the European Cystic Fibrosis Conference this year:
    ď Results presented at the meeting showed that treatment with ORKAMBI produces two effects on lung function Ė an acute improvement in ppFEV1 and a reduced rate of decline over the long term. The magnitude of the acute improvement was not correlated with the reduction in the rate of lung function decline. These data, together with similar results previously reported for KALYDECO in patients with the G551D mutation, suggest that baseline ppFEV1 or the magnitude of acute ppFEV1 change are not predictors of the potential for disease modification, measured in this case by a reduced rate of decline in ppFEV1, with CFTR modulation. ď
    So, in other words, even if there would be no immediate change in FEV1, this doesnít mean that modulators donít work in the long run!
    Lung Clearance Index is used at the yearly check up here in Sweden and I think they should be used elsewhere too, only we donít always realize all the details about the tests that are done. Itís when the patient breathes in a gas and then has to continue breathing into the machine until the gas has been reduced to itís minimal amount. The number obtained is the number of minutes it takes to reach the minimal level of gas evacuation, so the faster, the better. It measures the small airways ability to ventilate and they are starting to give more and more credit to this measurement as FEV1 can sometimes be deceiving.

  3. #23
    Junior Member
    Join Date
    Oct 2016
    Posts
    10
    Insurance is a good reason to sweat test before and after. A significant drop in sweat test values supports the argument that it is an effective treatment that should not be discontinued if the insurance company later wants to trim costs. For people clearly covered on-label that may not be necessary. For anyone taking it off-label, it's potentially valuable butt-covering.

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