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
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..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 sampli...
Source: Cystic Fibrosis Adults Forum - September 29, 2015 Category: Respiratory Medicine Authors: GoryLori Tags: Adults Source Type: forums
CF or asthama?
So, DS for a couple weeks kept clearing his throat but not really coughing more and not sick...then had a nasty coughing spell after exercising (and also I realized the house was horribly dusty). Dust, vacuumed, and upped his Xopenex to 3x a day, but that's it. Cough had gone away and after the extra dose he hasn't coughed (other than a random passing one and not harsh at all), and the throat clearing has gone almost entirely too. Is that an asthama thing? Or with CF would a cough and throat clearing go away like that with nothing but just adding a Xopenex (no vest, no antibotics, etc?) (It could just be the dust whic...
Source: Cystic Fibrosis Adults Forum - September 28, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
daily activities for folks that have PFTs in 30's and 40's?
I was just wondering what you all do in your daily lives when your PFTs start hitting the 30-40 percentile? Mine have dropped in this area and have finally had to step away from work because I am just to exhausted, so would love to hear what daily activities you guys do if you could share. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 27, 2015 Category: Respiratory Medicine Authors: Markus Tags: Adults Source Type: forums
Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 25, 2015 Category: Respiratory Medicine Authors: Megw212 Tags: Adults Source Type: forums
First step for EU access for Orcambi; 2-5 for gating for Kalydeco
http://investors.vrtx.com/releasedet...leaseID=933178
For our friends across the ocean. Only a first step, I know, but Godspeed in getting the drugs soon. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 25, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
cleaning tips
http://www.ivsolutions.com/2015/09/c...cleaning-tips/ (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 24, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
Insurance for Orkambi (GA)
Any Georgia residents on Orkambi via insurance? I am looking to sign up for Obamacare in a few months, so any experiences (bad/good) with GA carriers would be super helpful. Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 23, 2015 Category: Respiratory Medicine Authors: cmorgan Tags: Adults Source Type: forums
Achromobacter denitrificans
Hello Group
I was just in the hospital for the first time in 5 years. I use to culture Pseudo but it has been gone for about 5 years. I have also cultured Achromobacter Xylosoxidans since 1992 or so. This time i cultured Achromobacter denitrificans. After some research it seems this is not a nice bug and that it is rare. I know that when I first cultured Xylosoxidans I was also told that is was very very rare.
Has anybody cultured this other bug? I am wondering if it was a mistake or if maybe it has always been misidentified. I do not know but, it is weird that I did not culture Xylosoxidans at all. only the new bug and ...
Source: Cystic Fibrosis Adults Forum - September 23, 2015 Category: Respiratory Medicine Authors: aslong Tags: Adults Source Type: forums
Asthama and PFT?
I'm hoping our resident expert (Dot the darling!) can help with this but wanted to post instead of PM in case others have similar questions but also in case others have ideas based on their clinic's handling.
DS has just figured out the spirometer and in prep for next week's quarterly I wanted to see what how things changed pre and post brochialdialtor. When he was an infant and they did the "plastic box" test he had a pretty sharp improvement after the Xopenex which they said indicated an asthmatic component. he's been on Qvar daily for a couple years when he had a cough with running. So I'm wondering if tha...
Source: Cystic Fibrosis Adults Forum - September 21, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
GlobalGenes.org in Huntingdon Beach California
I will be there representing all of us! We are being sponsored by Healthcare at Home a company from the UK. I met Natalie Douglas in April at an eyeforpharma conference in Philadelphia. She is a Board member of www.globalgenes.org. She is impressed with our community, and the work we are doing since the important survey when 478 of you participated.
I will bring the reports...but mostly KNOW that YOU are the Gatekeepers of so much important work for Rare Diseases! I want to let everyone know YOU are the ones who cheer each other into clinical trials. You are the ones who are testing personalized medicine...which as ...
Source: Cystic Fibrosis Adults Forum - September 21, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
