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
