Residual Functions Mutations going to be on label for Kalydeco
Okay,I'm trying to do 10 things and maybe I'm not reading this right, but I think Vertex has just submitted sNDA for RESIDUAL FUNCTION for Kalydeco.
http://investors.vrtx.com/releasedet...leaseID=935666
Autumn: YOUR'S IS LISTED!!! (based on your profile!!) Off label now!!! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Hip Replacement
I'm headed down this road to a joint replacement. Has anyone on this site had one? There is NO information avail anywhere on this subject. I'm praying to get this done under a spinal, but I doubt that will happen. Thoughts?
I'm 51, female, FEV1 45, DDF508, retired. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: benthyr123 Tags: Adults Source Type: forums
Vanderbilt Pulmonary clinic in Tennesse anyone use them
I am thinking seriously about switching clinics. I can never get my drs to call back or communicate with me after I leave their office.It will be a 5 hr drive though so I need it to be worth it. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: regina65 Tags: Adults Source Type: forums
I need your help!
Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has...
Source: Cystic Fibrosis Adults Forum - October 7, 2015 Category: Respiratory Medicine Authors: sheilaaa14191 Tags: Adults Source Type: forums
North America cf conference starts tomorrow
https://arc.nacfconference.org/cff/live/14
Some live sessions on line (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 6, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
scared for my future
Hi, I'm 19 years old and I was diagnosed with cf when I was 7. I generally don't talk about my cf but every few months or so I usually go on Google and read about other people with cf. The reason I decided to post today is because I am extremely scared for myself. I don't take my medicine. Not because I decided I don't want to or don't have the time, just because I just don't feel like it. Some days I feel like "chrissy, you have to take your meds or one day you will regret it" and I'll take them. But that only occurs about once a month. Even now I'm telling myself I need to take my meds but I know my future sel...
Source: Cystic Fibrosis Adults Forum - October 6, 2015 Category: Respiratory Medicine Authors: Chrissy Callaway Tags: Adults Source Type: forums
Orkambi drug interactions that were not listed
Anyone have a interaction with Orkambi that a was not listed in their interactions list. If so what is it? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 6, 2015 Category: Respiratory Medicine Authors: regina65 Tags: Adults Source Type: forums
Haloterapy Opinions and Haloterapy Devices
Hi CF community
This group is great and helped us a lot.
I'm a parent of a recently diagnostic CF 8 year old girl. She had two positive sweat tests and we are waiting for the mutation test results.
She has tried Haloterapy (Salt Rooms), and we saw good result in releasing and ticketing the mucus.
In my opinion, it is one of the most efficient therapyes that she used.
I'm writing you to:
1º-Know your opinion about Haloterapy.
2º-Do you know any portable Device that we can use at home?
I have searched and found the following:
http://www.healyourself.com.au/aroma...py-halotherapy
http://www.salinetherapy.com/
https://w...
Source: Cystic Fibrosis Alternative Medicine Forum - October 4, 2015 Category: Respiratory Medicine Authors: Jose Coelho Tags: Alternative Medicine Source Type: forums
Have you stopped Orkambi because of side effects?
In various threads I've seen several refer to discontinuing Orkambi or dropping out of the study. I'm we could try to pull the info all together, with some of the surrounding factors to help CFers access things.
So, if you discontinued or dropped out, could you respond and note:
How long you were on and why you discontinued?
FEV at time of starting?
Antibiotics or meds you are allegic too or unable to tolerate besides Orkambi?
If you have autoimmune or other issues that make meds more challenging?
Thanks in advance! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 2, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Is there anything against Abscessus when Tygacil, Amikacin etc have failed?
Hi all,
With some desperation, I am looking for some support and ideas on this forum.
I have been hospitalized now 3 times for abscessus infection the last 8 years. The first 2 times I bounced back each time a bit after 11 and 6 months hospitalization, thanks to Tygacil which was just on the market. ANd then I stayed out of hospital for 3 years each time.
After the birth of my daughter (a miracle!! Thx Gd!), I started crashing and was hospitalized 5 months ago.
Unfortunately my abscessus is nowadays resistant against all commonly used drugs such clarithromycin,cefoxitin, moxifloxacin clofamicin,amikacin,meropenem and now...
Source: Cystic Fibrosis Adults Forum - October 1, 2015 Category: Respiratory Medicine Authors: hardclubber Tags: Adults Source Type: forums
Lung Function
I am seeing so many people post about their lung function. I see that some people have a lung function of 125%. Others say they have almost perfect function at 97%. Does anyone have any information on how this works? My son in law has a lung function of 71 and is 21 years old. How does that relate to non cf lung function? Thanks for your help! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 30, 2015 Category: Respiratory Medicine Authors: knottstreet Tags: Adults Source Type: forums
Help needed with info about CF
I am putting together a video for our 15th Annual CF Valentines Gala, and was hoping to get some input from soem of you in this forum. I do not have CF, however, I am very involved with our local chapter and with various events throughout our area.
Through this video, I would like to show how things have changed from the time our Gala started in 2001 to how things are now in 2015 for patients, friends, parents, grandparents, etc.
What has changed for you in teh last 14 years that you feel an audience of 700 should know about?
Thank you in advance for helping me out. Once I complete the video, I would love to share i...
Source: Cystic Fibrosis Adults Forum - September 30, 2015 Category: Respiratory Medicine Authors: FriendofCF Tags: Adults Source Type: forums
Cfpaf
Yikes, I just received this email from the Cystic Fibrosis Patient Assistance Foundation. Comes as quite a surprise that they are shutting down at the end of the year. I briefly looked at the Healthwell website to check out the guidelines and see what meds they provide assisance with, but it doesn't even show CF as a covered disease. It's a little concerning, how will this Healthwell agency cover the influx of CF patients? I'm guessing somehow the CFF will be funneling money there as opposed to the CFPAF. Hmmmm.. I hoping the assistance remains the same for those of us who use it. I wonder what government regulation...
Source: Cystic Fibrosis Adults Forum - September 30, 2015 Category: Respiratory Medicine Authors: triples15 Tags: Adults Source Type: forums
Elastase Test--- with or without enzymes??
My son's GI ordered his first fecal elastase 1 test today. He has been on enzymes for a few years as an "experiment" to see if they would help his constipation & promote weight gain, but he's never been given a dx of either PS or PI. The GI said that we should stop the enzymes for about a week before the test so the results will be accurate. From what I've read online the enzymes won't affect the test, but I would hope that the Dr. knows what she's talking about. What have you done before collecting a sample? Should I stop giving him enzymes? Thanks! (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - September 30, 2015 Category: Respiratory Medicine Authors: ByGrace Tags: Families Source Type: forums
Freebies
I have LOTS (100?) of disposable, sealed in the package, nebulizers for inhalation treatments.
All have the 7 foot hose, and mouthpiece.
They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some.
They are the green HUDSON II (2) Updraft nebs up for free.
Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading.
100 sterile lancets per box.
The box says:
For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood samp...
Source: Cystic Fibrosis Families Forum - September 29, 2015 Category: Respiratory Medicine Authors: GoryLori Tags: Families Source Type: forums
