When I stopped Kaly the one time that I did (at the end of Ph.2B in 2008) I had a flooding feeling...very wet - felt like hemopytsis. I wonder if this is what your friend is referring to Mandy? I wonder if his CFTR value isn't holding steady on the dose. He should note what time of day he has the feeling the most. I likened the feeling to "30 years of cf flooding back in" It was one of the worst feeligns I have ever had and definitely link it to increased anxiety in my processing of the disease after that point. The only good thing was that it was not painful. Nonetheless, I think people should stay on the drug or ween off...not go off cold turkey.
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To those on kalydeco---Lauren (your thoughts, please)
- Thread starter dramamama
- Start date
When I stopped Kaly the one time that I did (at the end of Ph.2B in 2008) I had a flooding feeling...very wet - felt like hemopytsis. I wonder if this is what your friend is referring to Mandy? I wonder if his CFTR value isn't holding steady on the dose. He should note what time of day he has the feeling the most. I likened the feeling to "30 years of cf flooding back in" It was one of the worst feeligns I have ever had and definitely link it to increased anxiety in my processing of the disease after that point. The only good thing was that it was not painful. Nonetheless, I think people should stay on the drug or ween off...not go off cold turkey.
saveferris2009
New member
Lauren is your son taking the drug?
saveferris2009
New member
Lauren is your son taking the drug?
M
MCGrad2006
Guest
There was a GREAT article in the Boston Globe a few weeks ago about a family in MA. The two daughters each were in the trial. Not knowing, one got placebo and one got drug. The one that got drug noticed a difference IMMEDIATELY! Amy, How do I post the link??
M
MCGrad2006
Guest
There was a GREAT article in the Boston Globe a few weeks ago about a family in MA. The two daughters each were in the trial. Not knowing, one got placebo and one got drug. The one that got drug noticed a difference IMMEDIATELY! Amy, How do I post the link??
M
MCGrad2006
Guest
<a href="http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways">http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways</a> Here is an attempt at posting...let me know if it works. I have been meaning to post a topic with the link, so I am going to do that too!
M
MCGrad2006
Guest
<a href="http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways">http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways</a> Here is an attempt at posting...let me know if it works. I have been meaning to post a topic with the link, so I am going to do that too!
S
semperfiohana
Guest
lauren, i was just wondering i have read that one of the side effects can be sore throat. did you or anyone you know that was on the drug have a sore throat. i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. i have noticed less coughing i think . although i never really realize how much i cough because i'm so used to. i've even asked my husband and he can't tell me cause he's so used to. i've noticed a little more throat clearing to. i go to the doctor in april and i'm hoping for higher pfts! i may pee my pants if my pfts are higher!
S
semperfiohana
Guest
lauren, i was just wondering i have read that one of the side effects can be sore throat. did you or anyone you know that was on the drug have a sore throat. i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. i have noticed less coughing i think . although i never really realize how much i cough because i'm so used to. i've even asked my husband and he can't tell me cause he's so used to. i've noticed a little more throat clearing to. i go to the doctor in april and i'm hoping for higher pfts! i may pee my pants if my pfts are higher!
I did not experience sore throat. Isaac is not taking the drug yet. He goes to clinic next week though and is incidently scheduled for his first pfts which was a prerequisite for me to be willing to sign him up. Since he has regular sweat chloride result at 3 months and again at 2 years that won't be in indicator if it's doing anything for him. I would like to know that it is offering him some benefit though will talk to his doctor about it next week. Last I spoke to her about it she was a big proponent of anyone with G551D getting on it ASAP even if it was off label use. As is the case with Isaac since he is only 4 and it's approved for over 6. I have a bag of M&Ms that he is working on learning to swallow since he'll need to be able to swallow the pill. We made the choice not to sign him up for the age 2-5 study so that he could get the drug sooner in the case that that study carries on for a long time (doubtful). His doc felt strongly that she'd have little issue getting coverage for him on it off label. We'll see what she is saying now that she's probably crossed the bridge with other patients. I'm a little worried what our corporation is going to think of having two people in one family on 300K annual medications but that's another thread for another day.
I did not experience sore throat. Isaac is not taking the drug yet. He goes to clinic next week though and is incidently scheduled for his first pfts which was a prerequisite for me to be willing to sign him up. Since he has regular sweat chloride result at 3 months and again at 2 years that won't be in indicator if it's doing anything for him. I would like to know that it is offering him some benefit though will talk to his doctor about it next week. Last I spoke to her about it she was a big proponent of anyone with G551D getting on it ASAP even if it was off label use. As is the case with Isaac since he is only 4 and it's approved for over 6. I have a bag of M&Ms that he is working on learning to swallow since he'll need to be able to swallow the pill. We made the choice not to sign him up for the age 2-5 study so that he could get the drug sooner in the case that that study carries on for a long time (doubtful). His doc felt strongly that she'd have little issue getting coverage for him on it off label. We'll see what she is saying now that she's probably crossed the bridge with other patients. I'm a little worried what our corporation is going to think of having two people in one family on 300K annual medications but that's another thread for another day.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. </end quote>
Sorry to hijack your thread, Ms. Mandy. Just so curious about all of this stuff:
Candice out of curiosity did you cough up different color/texture mucus when you first started the drug? Do you feel more energetic?
Sorry to hijack your thread, Ms. Mandy. Just so curious about all of this stuff:
Candice out of curiosity did you cough up different color/texture mucus when you first started the drug? Do you feel more energetic?
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. </end quote>
Sorry to hijack your thread, Ms. Mandy. Just so curious about all of this stuff:
Candice out of curiosity did you cough up different color/texture mucus when you first started the drug? Do you feel more energetic?
Sorry to hijack your thread, Ms. Mandy. Just so curious about all of this stuff:
Candice out of curiosity did you cough up different color/texture mucus when you first started the drug? Do you feel more energetic?
C
cfsucks
Guest
how come more people aren't chiming in on the drug? are there so few people on it?
the changes you experienced sound nothing short of amazing! i really hope these other drugs work for df508 as well as kalydeco did for gating mutations!
im also curious if you experienced any changes other than in your lungs- i know it'd be hard to validate but things like having to take less enzymes? or less intestinal issues if you have any.
the changes you experienced sound nothing short of amazing! i really hope these other drugs work for df508 as well as kalydeco did for gating mutations!
im also curious if you experienced any changes other than in your lungs- i know it'd be hard to validate but things like having to take less enzymes? or less intestinal issues if you have any.
C
cfsucks
Guest
how come more people aren't chiming in on the drug? are there so few people on it?
the changes you experienced sound nothing short of amazing! i really hope these other drugs work for df508 as well as kalydeco did for gating mutations!
im also curious if you experienced any changes other than in your lungs- i know it'd be hard to validate but things like having to take less enzymes? or less intestinal issues if you have any.
the changes you experienced sound nothing short of amazing! i really hope these other drugs work for df508 as well as kalydeco did for gating mutations!
im also curious if you experienced any changes other than in your lungs- i know it'd be hard to validate but things like having to take less enzymes? or less intestinal issues if you have any.