Recent content by JoAnn

Thanks Candice.

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...

Express scripts and it comes from their specialty pharmacy which also provided it for studies so they had it in stock. It too about 3 weeks from the time we talked with clinic, then vertex, then the pharmacy and then in a few days after that - delivery. Best wishes.

Express scripts and it comes from their specialty pharmacy which also provided it for studies so they had it in stock. It too about 3 weeks from the time we talked with clinic, then vertex, then the pharmacy and then in a few days after that - delivery. Best wishes.

Thanks Chris - we can make anything work at this point for the optimal benefits. I am just trying to gather as much info and experiences as I can. Thanks again!

Thanks Chris - we can make anything work at this point for the optimal benefits. I am just trying to gather as much info and experiences as I can. Thanks again!

Hi Lauren, Our directions do not indicate 30 minutes at all. It does say to take with a fatty food and 12 hours apart. It also says to not have grapefruit or seville oranges. Thanks. Our doctor also did not give any special directions except keep other meds and treatments the same, no...

Hi Lauren, Our directions do not indicate 30 minutes at all. It does say to take with a fatty food and 12 hours apart. It also says to not have grapefruit or seville oranges. Thanks. Our doctor also did not give any special directions except keep other meds and treatments the same, no...

Our ins. approved it and we got it yesterday - regular copay. He is starting it today.

Our ins. approved it and we got it yesterday - regular copay. He is starting it today.

For those of you taking Kalyceco - Do you take it with a fatty food like the directions say? Also do you take it the same times every day or is there wiggle room on the weekends to shift it a couple hours?

For those of you taking Kalyceco - Do you take it with a fatty food like the directions say? Also do you take it the same times every day or is there wiggle room on the weekends to shift it a couple hours?

Last year my son had a borderline 2 hour glucose tolerance test. His numbers were higher than they would like but after taking sugars at home over many days - it was decided he has cfrd but to only treat with insulin if over 200 or on steroids. Neither of which has happened over the past year...

Last year my son had a borderline 2 hour glucose tolerance test. His numbers were higher than they would like but after taking sugars at home over many days - it was decided he has cfrd but to only treat with insulin if over 200 or on steroids. Neither of which has happened over the past year...

We mark ours with sharpies - it does eventually wash off. If we boil it though, isn't it ok after it is sterilized if if is used for a different med.? We re-write on them every few days once the writing gets light after boiling.