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Rebjane
04-27-2012, 08:11 PM
Curious if Kalydeco can help you get rid of bacteria you are culturing? Anyone keeping track of their sputum cultures and the type of bacteria they culture? I know people are tracking their PFT's but it would be also interesting to track amount and type of bacteria in sputum cultures.

Rebjane
04-27-2012, 08:11 PM
Curious if Kalydeco can help you get rid of bacteria you are culturing? Anyone keeping track of their sputum cultures and the type of bacteria they culture? I know people are tracking their PFT's but it would be also interesting to track amount and type of bacteria in sputum cultures.

Incomudrox
04-28-2012, 01:59 PM
Yes it will help.

Incomudrox
04-28-2012, 01:59 PM
Yes it will help.

Tom
05-16-2012, 09:08 AM
My son went from culturing PA and staph to normal flora after 2 1/2 months of Kalydeco. We will see if this trend continues, but this is his first normal flora culture.

Tom
05-16-2012, 09:08 AM
My son went from culturing PA and staph to normal flora after 2 1/2 months of Kalydeco. We will see if this trend continues, but this is his first normal flora culture.

JENNYC
05-16-2012, 11:34 AM
How exciting!!! Congrats Tom!!

JENNYC
05-16-2012, 11:34 AM
How exciting!!! Congrats Tom!!

kots66
05-16-2012, 05:45 PM
That's fantastic Tom, congratulations! If you don't mind me asking, how old is your son and how long has he been culturing PA?

kots66
05-16-2012, 05:45 PM
That's fantastic Tom, congratulations! If you don't mind me asking, how old is your son and how long has he been culturing PA?

Tom
05-16-2012, 08:59 PM
He is 7yrs old and has been culturing PA for a year.

Tom
05-16-2012, 08:59 PM
He is 7yrs old and has been culturing PA for a year.

Aboveallislove
05-16-2012, 10:49 PM
If you don't mind sharing: Was he also on an antibiotic? Such great news!!

Aboveallislove
05-16-2012, 10:49 PM
If you don't mind sharing: Was he also on an antibiotic? Such great news!!

Tom
05-17-2012, 01:41 AM
He finished a round of Cayston in December but still cultured PA in Jan. He started Kalydeco at the beginning of March.

Tom
05-17-2012, 01:41 AM
He finished a round of Cayston in December but still cultured PA in Jan. He started Kalydeco at the beginning of March.

echolaura
05-17-2012, 09:10 PM
Does anyone know if Kalydeco has eradicated any MRSA? (Tom, that's wonderful news) My 18 year old daughter just started Kalydeco about a month ago and hasn't had any noticeable physical changes other than less coughing.

echolaura
05-17-2012, 09:10 PM
Does anyone know if Kalydeco has eradicated any MRSA? (Tom, that's wonderful news) My 18 year old daughter just started Kalydeco about a month ago and hasn't had any noticeable physical changes other than less coughing.

Tom
05-18-2012, 09:41 AM
I think there is someone (Dr. Roe?) on here who has a son with MRSA that has been taking Kalydeco for about 3 months. Maybe she can help you.

Tom
05-18-2012, 09:41 AM
I think there is someone (Dr. Roe?) on here who has a son with MRSA that has been taking Kalydeco for about 3 months. Maybe she can help you.

jbrandonAW
05-19-2012, 01:52 PM
I started kalydeco in march and I culture MRSA. It was gone the last time I had cultures done a month after starting. I dont think its bc of kalydeco though, i believe its from taking garlic.

jbrandonAW
05-19-2012, 01:52 PM
I started kalydeco in march and I culture MRSA. It was gone the last time I had cultures done a month after starting. I dont think its bc of kalydeco though, i believe its from taking garlic.

cabgodfrey
05-29-2012, 04:34 PM
Would love to hear more from those of you who are taking Kalydeco. We are living vicariously through you all as our daughter does not have G551D and is anxiously awaiting continued trials of VX809 with Kalydeco. In the meantime, we are very excited for those of you who are able to take Kalydeco and are anxious to hear how things are changing for you.

echolaura
05-29-2012, 04:54 PM
hi cabgodfrey...my 18 yr old g551d daughter has been on for about 60 days. Prior to starting kalydeco, her function dropped from the 70's to the 40s over the course of about 2 years. She has less coughing now, claims to not feel any differently, and I am anxiously awaiting her second PFTs. Her FEV1 returned to 2.2 from 1.8 a month before that. Her response to the drug seems quite tame compared to the stories I have heard, but improvement is improvement, and I will happily take whatever she gets. I am anxious for news on her regarding whether or not she can stop taking Cayston, because I want it to work when she needs it to work. I understand she still will get exacerbations and I don't want to build resistance, the way she did with TOBI. Good luck...I hear there are some modifications being made today by Vertex in regards to the outcome of some phase 2 trials of 770/809