My first update since starting Kalydeco

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jessykt

Guest
Good News Everyone!

Since I started the “miracle drug,” my pulmonary function tests went from 61% to 69%! This is in spite of not having a nebulizer treatment for two weeks since my insurance decided to reject my Xeopenex. Woo hoo! <img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" />

I'm still interested in side effects if anyone else is taking it!

Thanks,
Jessy
 
J

jessykt

Guest
Good News Everyone!

Since I started the “miracle drug,” my pulmonary function tests went from 61% to 69%! This is in spite of not having a nebulizer treatment for two weeks since my insurance decided to reject my Xeopenex. Woo hoo! <img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" />

I'm still interested in side effects if anyone else is taking it!

Thanks,
Jessy
 
C

cindylou

Guest
Jessy, have YOU had any side effects? I'm going to start it Thursday <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I can't believe you have gone so long without a bronchodilator. I would be dying!!!
 
C

cindylou

Guest
Jessy, have YOU had any side effects? I'm going to start it Thursday <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I can't believe you have gone so long without a bronchodilator. I would be dying!!!
 
J

JENNYC

New member
Wow that's amazing!! Soooo happy for you!!! Thanks for letting us know. Hope your PFT's keep going up! How are you feeling other than increase in PFT's?
 
J

JENNYC

New member
Wow that's amazing!! Soooo happy for you!!! Thanks for letting us know. Hope your PFT's keep going up! How are you feeling other than increase in PFT's?
 
R

Rebjane

Super Moderator
Jessy,

That's wonderful! Does your insurance cover the Kalydeco? I would be up my insurance co butt if they did not cover a bronchodilator for my child with CF. That makes absolutely NO sense and makes me very angry for you.

However, I am so glad you are doing well!
 
R

Rebjane

Super Moderator
Jessy,

That's wonderful! Does your insurance cover the Kalydeco? I would be up my insurance co butt if they did not cover a bronchodilator for my child with CF. That makes absolutely NO sense and makes me very angry for you.

However, I am so glad you are doing well!
 
H

hmw

New member
Wow, that is fantastic!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'd love to know how else you are feeling too. <img src="i/expressions/face-icon-small-smile.gif" border="0">

That drives me crazy that an insurance company would cover nearly $300k med and not cover a simple bronchodilator... Makes NO sense. I wonder if your pft's would go up even more if you could use your neb w/ your airway clearance. *rolling eyes at the 'logic' of these companies*
 
H

hmw

New member
Wow, that is fantastic!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'd love to know how else you are feeling too. <img src="i/expressions/face-icon-small-smile.gif" border="0">

That drives me crazy that an insurance company would cover nearly $300k med and not cover a simple bronchodilator... Makes NO sense. I wonder if your pft's would go up even more if you could use your neb w/ your airway clearance. *rolling eyes at the 'logic' of these companies*
 
J

jessykt

Guest
I don't feel any different on Kalydeco...but it was amazing I went that long without a treatment, so it must be doing something! My cough changed for about a week, and now I don't bring anything up. I think the only side effect I've noticed is my increased want of sugar! I don't know if that's the drug or just something natural going on though. Does anyone else have any side effects??

And the thing with xopenex is they were supposed to be billing Medicare Part B--Part D has always refused it (they won't pay for any of my liquid inhaled medications). Since it's a new pharmacy to me, they didn't listen when I told them this; it took them 2 weeks to figure it out, since you know, patients don't know what they're talking about. Plus, for some reason, ASTHMA needed to be added as a diagnosis for me to get it; I suppose cfers can breath just fine and don't require breathing treatments!
 
J

jessykt

Guest
I don't feel any different on Kalydeco...but it was amazing I went that long without a treatment, so it must be doing something! My cough changed for about a week, and now I don't bring anything up. I think the only side effect I've noticed is my increased want of sugar! I don't know if that's the drug or just something natural going on though. Does anyone else have any side effects??

And the thing with xopenex is they were supposed to be billing Medicare Part B--Part D has always refused it (they won't pay for any of my liquid inhaled medications). Since it's a new pharmacy to me, they didn't listen when I told them this; it took them 2 weeks to figure it out, since you know, patients don't know what they're talking about. Plus, for some reason, ASTHMA needed to be added as a diagnosis for me to get it; I suppose cfers can breath just fine and don't require breathing treatments!
 
D

DrRoe

Guest
Hi, just a quick note - my son has been on Kalydeco for about a month and 1/2.. he's gained about 4 pounds and his lung functions have increased. His FEV1 increased from 65% to 83% and his FVC went from about 85% to 96%. He says he feels better, more energy and less generalized discomfort.
 
D

DrRoe

Guest
Hi, just a quick note - my son has been on Kalydeco for about a month and 1/2.. he's gained about 4 pounds and his lung functions have increased. His FEV1 increased from 65% to 83% and his FVC went from about 85% to 96%. He says he feels better, more energy and less generalized discomfort.
 
J

JENNYC

New member
That is amazing DrRoe!!! Congrats!!! Absolutely chilling all of these wonderful advances!!! Thanks for sharing your sons amazing results, it gives us so much hope!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JENNYC

New member
That is amazing DrRoe!!! Congrats!!! Absolutely chilling all of these wonderful advances!!! Thanks for sharing your sons amazing results, it gives us so much hope!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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