Kalydeco - side effects

[JoAnn]

Hi
My son started taking Kalydeco Sat - 5 doses so far. Today he has had a horrible headache and nausea. He did throw up a lot of junk. The headache subsided for a bit and then was full throttle again. Anyone have these side effects? I left a message at clinic. I haven't heard back. Just wondering if anyone in the studies experienced them and if they eventually went away?

Thanks as always!

 

[semperfiohana]

when i first started it i had a really sore throat. i've been on it for roughly 3 weeks and my sore throat is gone now. i hope it gets better for him!

 

[JoAnn]

Thanks Candice.

 

[dramamama]

I do know that for some patients there have been what my doc called a detox effect. Headache, achey, sore lungs, feeling pretty miserable in general. This is not all patients, but it definitely has been reported. One of his patients was so sick the first week, he couldn't go to work.

I hope he feels better soon

 

[Austen742]

Sorry to hijack this thread but i can see there are people on here who are or have children that are taking Kalydeco. Our UK group Quest for Kalydeco are trying to make some headway on getting Ivacaftor approved for funding in the UK. We have been told that the stumbling block to all this (other than the massive price) is there is limited long term data and no evidence that people on Kalydeco use less treatments. Hence not being cost effective. So we are trying to get some personal testimonies to take to present to them at a meeting on Thursday to show this is true. If you can help us with this it would be amazing and we would hugely appreciate it. Plus feel free to email us on patient.interest.group@gmail.com.

We also have a very quick anonymous survey that can be completed to help our cause <img src="i/expressions/face-icon-small-smile.gif" border="0"> http://www.surveymonkey.com/s/RNNC8HN

 

[chandan20]

when i first started it i had a really sore throat. i've been on it for roughly 3 weeks and my sore throat is gone now. i hope it gets better for him!

Some home remedies for sore throat:

* Put 1 tablespoon of salt in a glass of lukewarm water and do gargle, at least 4-5 times a day.

* You can also have 1 spoon of honey mix with ginger juice. But it should be taken once a day because it’s very strong.

* Instead of water you can do the gargling with betadine or even vodka. They are best in killing bacteria.

* Hot lemonade mix with honey relieves the pain quickly.

These were some home remedies for sore throat. for more information on sore throat please visit my website http://sorethroatremediess.com/

 

[JENNYC]

Abby really hasn't had any side effects other than she had a rough (not sore) throat two mornings out of the almost 2 months that she's been taking it. Sorry he is having so much trouble

 

[musclemania70]

be thankful he can take it.

 

[dasjsmum]

HI All

I wanted to let you know that my son who has been on Kalydeco now for three years almost (part of ph3 + now on open lable), had headaches and such when he started. Otherwise he has experienced no adverse side effects, including his liver with ALT levels normalising after starting Kaly.

Recently he did have a kidney stone - his first - I dont know if this is related to Kalydeco, it could be as that's the only drug he's been on for three years. Ofcourse it could be related to using antibiotics for years (he's nearly 33). Anyhow, it is something to consider if your young child is starting Kaly. The kidney stone was excruciatingly painful. The only way they will know if this is random will be on reviewing others still on open label, so here's hoping it is random, but still I think it's a very small price to pay for the 'normal' life which Kaly has given my son.

Also, for those with young children who are in good health, it may be worth considering leaving off Kaly...after all, we still dont know the long term effects of the drug. My youngest son is 16 and we cant get it here yet for him. However, he is in good cf health so we're fortunate with that. If you can get away with not using chemicals you're better off.

 

[CyrilCrodius]

I've been thinking that they will probably eventually figure out that it's better for people with G551D to start out slowly as it seems to be perhaps a little shockingly too effective.

 

[CyrilCrodius]

Sorry to hijack this thread but i can see there are people on here who are or have children that are taking Kalydeco. Our UK group Quest for Kalydeco are trying to make some headway on getting Ivacaftor approved for funding in the UK. We have been told that the stumbling block to all this (other than the massive price) is there is limited long term data and no evidence that people on Kalydeco use less treatments. Hence not being cost effective. So we are trying to get some personal testimonies to take to present to them at a meeting on Thursday to show this is true. If you can help us with this it would be amazing and we would hugely appreciate it. Plus feel free to email us on patient.interest.group@gmail.com.

We also have a very quick anonymous survey that can be completed to help our cause <img src="i/expressions/face-icon-small-smile.gif" border="0"> http://www.surveymonkey.com/s/RNNC8HN

Well that's DUMB! Kalydeco doesn't mean that you're cured, so of COURSE you'd still need other treatments! It's like saying "Well.... we're going to give you half the dose of this med... because there is no evidence that using more of it will cause you to use less of it."

Idiots!

 

[sdeuber]

Hi all
new to the Forum and new to Kalydeco.
I was not diagnosed with CF until I was way in my mid thirties .... lots of lung damage as nobody knew what to do :-( But good news is that I do have a mild form of CF and so I am not affected by weight loss, the pancreatic problems etc.
I started Kalydeco last week - and feel really weird: headaches, little dizzinies, and nauseous.
will it go away? Saw somebody else posting it might be the initial "shock" of the drug to your body causing the headaches ...
Thanks!
have a great day!

 

[JENNYC]

My little one wouldn't know to complain of the things you just mentioned but I did think of another side effect I wanted to add. Excessive ear wax...weird...but doesn't seem to cause a problem.

Hope you get to feeling better!!

 

[GenH]

Hi all
new to the Forum and new to Kalydeco.
I was not diagnosed with CF until I was way in my mid thirties .... lots of lung damage as nobody knew what to do :-( But good news is that I do have a mild form of CF and so I am not affected by weight loss, the pancreatic problems etc.
I started Kalydeco last week - and feel really weird: headaches, little dizzinies, and nauseous.
will it go away? Saw somebody else posting it might be the initial "shock" of the drug to your body causing the headaches ...
Thanks!
have a great day!

Hello, I'm on Kalydeco and I personally did not experience those symptoms, but I have seen people mention similar symptoms in a facebook group called Kalydeco Miracles, https://www.facebook.com/groups/359954544023650

Generally most people have said those symptoms go away after a few weeks, and that they can be related to the sinuses and clearing of mucus from the lungs.