tag:blogger.com,1999:blog-9103255629382273932.post3384193061848989390..comments2013-01-29T14:17:00.061-08:00Comments on Sparks with Salt: Getting a script for Kalydeco off-labelsalty sparkhttp://www.blogger.com/profile/13436735579459871356noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-9103255629382273932.post-83370118285210240442013-01-29T14:17:00.061-08:002013-01-29T14:17:00.061-08:00I have the same mutations also, and have been cont...I have the same mutations also, and have been contemplating obtaining Kalydeco for two months and see what happens. I am sure my insurance will not cover it, so I will need to figure out how to pay for it. Can you e-mail me directly? cjpcarchitect@hotmail.comcjpcarchitecthttps://www.blogger.com/profile/15336564405155167934noreply@blogger.comtag:blogger.com,1999:blog-9103255629382273932.post-54113250301404937282012-04-16T09:56:27.368-07:002012-04-16T09:56:27.368-07:00Thanks for this information. My doctor refuses to ...Thanks for this information. My doctor refuses to write a prescription for me to try even though my insurance will cover it.Trail Blazinghttps://www.blogger.com/profile/01478181048131756142noreply@blogger.comtag:blogger.com,1999:blog-9103255629382273932.post-8184277623603226282012-04-14T16:56:16.459-07:002012-04-14T16:56:16.459-07:00Hi- I have your exact mutations! I love the intern...Hi- I have your exact mutations! I love the internet. I'll be especially interested to hear about your sinuses and gut, so please keep posting. I had a lung transplant 13 years ago at age 23, so the lung stuff won't really affect me, but dang, this is so awesome to hear. Congratulations and thanks for posting!<br /><br />ClaireUnknownhttps://www.blogger.com/profile/16800249750574035292noreply@blogger.comtag:blogger.com,1999:blog-9103255629382273932.post-77932544410349824432012-03-30T08:04:09.148-07:002012-03-30T08:04:09.148-07:00Hello, I'm working on a blog entry about the g...Hello, I'm working on a blog entry about the genetic reason why Kalydeco might work in someone like you, would you mind if I reference your blog in my entry? My goal is to enlighten more people to the possiblity of Kalydeco having benefit for them because of a process called "transcomplementation"--that is, interaction BETWEEN two different CF mutations. It is very exciting research and I predict the pool of eligible Kalydeco candidates to keep growing and growing! Thanks, <br />RebeccaRebeccahttps://www.blogger.com/profile/01834134399653596127noreply@blogger.comtag:blogger.com,1999:blog-9103255629382273932.post-43740732286630677412012-03-20T06:44:21.731-07:002012-03-20T06:44:21.731-07:00They did that for me. I was shocked.
I have no i...They did that for me. I was shocked.<br /><br />I have no idea about Tobi because I can't take that drug. All I can tell you is how I got Kalydeco and my doctor did nothing but write the script.salty sparkhttps://www.blogger.com/profile/13436735579459871356noreply@blogger.comtag:blogger.com,1999:blog-9103255629382273932.post-34127725071213205752012-03-19T16:15:22.497-07:002012-03-19T16:15:22.497-07:00Just so I'm sure...if I get a prescription fro...Just so I'm sure...if I get a prescription from my doctor CF Services will try and get the drug approved by insurance? That is where I would get it I assume, because my specialty insurance pharmacy doesn't have it. <br /><br />The reason I ask is because CF Services is making my doctor deal with getting TOBI approved by my insurance. I just want my doctor to write the prescription for Kalydeco and nothing else.any other work and he might say no.Unknownhttps://www.blogger.com/profile/13606472687570610152noreply@blogger.com