tag:blogger.com,1999:blog-1846340485746544317.post3008123348643468006..comments2023-12-24T07:09:28.531-05:00Comments on NoExcuses: 5 weeks of KalydecoUnknownnoreply@blogger.comBlogger13125tag:blogger.com,1999:blog-1846340485746544317.post-60147292529184760362012-11-23T16:14:46.496-05:002012-11-23T16:14:46.496-05:00@ Chantal, yes my insurance paid for Kalydeco 100%...@ Chantal, yes my insurance paid for Kalydeco 100%. Many people bash the US healthcare system of insurance, but this is a great example of it working well. I did not pay for it myself - my insurance covered it 100%NoExcuseshttps://www.blogger.com/profile/01015122167362668804noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-58747771872613058092012-11-23T16:12:20.577-05:002012-11-23T16:12:20.577-05:00Hi there,
So how DID you get hold of enough Kalyde...Hi there,<br />So how DID you get hold of enough Kalydeco to do this experiment on yourself? My two daughters have a gating mutation and I have been trying to get them into a trial....but there are no participating cf centrum in the Netherlands... Did you pay it yourself?<br />Cheers, chantalAnonymoushttps://www.blogger.com/profile/02169270205213695428noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-53773750048360647232012-06-16T23:10:39.702-04:002012-06-16T23:10:39.702-04:00I don't know much about Di507 but I'm look...I don't know much about Di507 but I'm looking for evidence of Kalydeco helping a splice mutation in order to write an appeal for insurance's disapproval of Kalydeco for my son's DF508 and 621+1G>T. Did you write any type of an appeal at any point? Do you have any thoughts on where to find evidence it may work for us?BGhttps://www.blogger.com/profile/06373281991796003525noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-15435117199709030162012-06-08T10:34:41.125-04:002012-06-08T10:34:41.125-04:00My original post about Kaly has my mutationsMy original post about Kaly has my mutationsNoExcuseshttps://www.blogger.com/profile/01015122167362668804noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-42725102219985314232012-06-08T10:33:49.470-04:002012-06-08T10:33:49.470-04:00Any chance you could tell us your mutations? I am...Any chance you could tell us your mutations? I am trying to get off-label and know a few people with my son's mutation that have benefited from Kaly.BGhttps://www.blogger.com/profile/06373281991796003525noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-90651801382327492312012-04-20T08:43:10.738-04:002012-04-20T08:43:10.738-04:00Thanks for the update! Sounds like Kalydeco is m...Thanks for the update! Sounds like Kalydeco is making a difference for you and that's great. We all know that FEV1 can flucuate and it is just one part of the big picture. If you are feeling better, that's all that matters. :) Wishing you all the best!Teresa F.https://www.blogger.com/profile/07040325964880850495noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-83916307480638036492012-04-20T02:02:46.123-04:002012-04-20T02:02:46.123-04:00CHOP in Philadelphia is now doing experiments with...CHOP in Philadelphia is now doing experiments with Kaly in other non-gating mutations. ;)Incomudroxhttps://www.blogger.com/profile/14086929285192291886noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-5326593876755637222012-04-18T19:37:59.535-04:002012-04-18T19:37:59.535-04:00@Woody, great news! all patients with G551D that m...@Woody, great news! all patients with G551D that make under $150k in the US can get access to Kaly per assistance from the manufacturer and the CF Foundation.<br /><br />So not only will everyone have access to the drug, but - those who don't have G551D have access where we are seeing clinical benefit. <br /><br />I'm willing to bet that those without G551D will have access to the drug in the UK.NoExcuseshttps://www.blogger.com/profile/01015122167362668804noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-47038418185585982082012-04-18T13:21:56.506-04:002012-04-18T13:21:56.506-04:00Your meter seems to be quite good (which one is it...Your meter seems to be quite good (which one is it, btw? I'm looking for one...) A difference of only .03L in readings, especially for adult capacity lungs- is pretty insignificant in my opinion. If you ever did pursue getting a sweat test in future, it would be interesting to compare against ANY past ones you've had, since it's highly unlikely your sweat chloride level has changed all that much since you had it done way back when. <br /><br />Wishing the very best. I know how hard you work to maintain your health and I hope this continues to be, at the very least, another tool to help enable everything else you are doing to work better. :)harrietthttps://www.blogger.com/profile/09962457420951970389noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-25571124430104297212012-04-18T11:41:34.665-04:002012-04-18T11:41:34.665-04:00As a lefty socialist from the UK I am going to res...As a lefty socialist from the UK I am going to resist the urge to respond in a Michael Moore style and just hope that everyone wjho can benefit has access to Kalydeco. (Kalydeco is currently under review by the NHS while we wait for the European license to come through next month) ;-)<br /><br />Anyway, thanks for the update.Woodyhttps://www.blogger.com/profile/10941380097324635644noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-84825652688409167592012-04-16T22:16:26.448-04:002012-04-16T22:16:26.448-04:00Hi Harriett. I did PFTs on Monday, April 9 at my c...Hi Harriett. I did PFTs on Monday, April 9 at my clinic and then came home to compare to my home meter - the FEV1s were 0.03 apart. So although you are correct, I didn't have the opportunity to take a look at my FEV1 on the same machine a few weeks ago because I didn't have a clinic appointment, I do believe my home machine correlates pretty closely to my clinic machine. But you certainly make a very valid point and I will continue to update my FEV1. <br /><br />I did not do a sweat test prior - unfortunately I felt lucky to just get an Rx and my doc wasn't too keen on doing one. I didn't want to push hard for it because I had already pushed quite a bit just to get Kaly. You are 100% correct about changes in CFTR function - fortunately others are doing this during their off label Kaly trials so we will see what they come up with. <br /><br />I definitely appreciate what you are you saying about treatments - for me, they are essential. <br /><br />Anyway, I am excited for my results but I definitely understand they were anything but scientific. I did the best I could, but there is no question that not using the same meter as you correctly pointed out and not doing a pre and post sweat test makes my findings even more subjective. Luckily for me, I get to make my own decisions about Kaly. Ha :)So I only have to prove it works to myself.<br /><br />I hope others keep sharing their experiences. Thanks again for your questions and I will continue to post!NoExcuseshttps://www.blogger.com/profile/01015122167362668804noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-39293455336015113362012-04-16T12:21:59.728-04:002012-04-16T12:21:59.728-04:00A couple questions out of curiosity~ were your sta...A couple questions out of curiosity~ were your starting fev1 and the one reflecting the 11% increase taken on the same meter? Because that is truly impressive and I am so happy for you. I am also wondering if you had a sweat test done prior to starting Kalydeco and if you'll have a repeat test done~ because even if treating your CFRD muddies the waters when it comes to further improvements in your pulmonary health, it certainly wouldn't affect changes in your CFTR function. I am really curious about this aspect of it. <br /><br />I notice you say you saw these improvements without making any changes to your diet, exercise or meds and I am SURE that helps. Working with the mechanism of action of the med and helping to clear out whatever it's breaking up just makes more sense than dropping stuff like I see a lot of other references to. <br /><br />I hope you continue to do well and insurance keeps covering it.harrietthttps://www.blogger.com/profile/09962457420951970389noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-24969110333971247162012-04-15T14:54:13.874-04:002012-04-15T14:54:13.874-04:00Woah, impressive results! I do have G551D and have...Woah, impressive results! I do have G551D and have been on Kalydeco for 1.5 weeks. Thus far, I definitely haven't hit the "feeling awesome" part of the drug. I'm still coughing up a lot of crud and feeling generally not so great. The huge thing I have noticed, though, is that coughing it up has become WAY easier!cindy baldwinhttps://www.blogger.com/profile/01173344689280406987noreply@blogger.com