What to expect with Kalydeco

[CFwarrior86]

I have the mutation 2789+5g<-A, which is one of the mutations currently FDA approved with Kalydeco. I got a call from my doctor with the wonderful news and went in to fill out the paperwork and should be expecting the medicine anytime now!
Im curious as to what effects should I expect from this medicine? both good and bad. how long after the paperwork was filled out did it take to take to receive this medicine? if you have Medicare through Social Security, did it pay for the medicine completley? any information is greatly appreciated! Thanks

 

[Jeannie85]

I don't have info on your mutations regarding Kalydeco but we just go ours in the mail yesterday for my 4 year old daughter. She took the first dose last night. Our insurance (thru my husband's employer ) has 10 days to review the claim. I believe it was 8 days that they took before we found out it was going to be covered. That was this past friday. So once it was approved it came quickly. Not sure if this will help but it is an exciting time! I hope it goes fast for you!

 

[stephen]

Cfwarrior86,

I see your mutation, 2789+5g<-A, is a Class 5 with some Residual function. My mutation, D1152H, is a Class 4, also with Residual function.

Even people with the same mutation appear to respond differently to Kalydeco - so I can only give you my experiences.

My reaction to it has been phenomenal! I saw dramatic changes less that a day after taking my first dose. My mucus became much thinner and I started bringing up a ton of what looked like old dark sputum. After a few days the coughing almost completely stopped and thank G-d, really hasn’t returned in the 3 ½ years I’ve been taking Kalydeco. I haven’t required any IV antibiotics and have only needed Cipro a few times. Also, there haven't been any negative side affects that I'm aware of.

As for cost, my co-payments are considerable. I too am on a Medicare plan through Social Security. In 2017, these plans require 5% co-pay after an outlay of $4950. Kalydeco costs close to $300,000 a year. The 5% amounts to a yearly outlay of over $14,500!

I’ve never considered looking for other health insurance since mine is provided through my wife’s ex-employer. It’s really great in terms of cost and most coverage. Also, I’m not sure if there are any decent “Medicare” health plans that would provide better all-around coverage, including for Kalydeco.

Co-pay assistance organizations do exist. Some are income based. “Fortunately” my income is above the level for which they will supply assistance.

Others co-pay assistance organizations would not provide assistance for off-label drugs. Until recently, I was taking Kalydeco off-label. When my mutation recently received FDA approval I again contacted some of the co-pay assistance organizations that did not have an income related test. I was told that federal law prohibited them from providing assistance to anyone with a Medicare drug plan.

All things considered, I am not complaining!

I do hope that Kalydeco ends up working for you, and that whatever your costs are you can cover them. Do explore the co-pay assistance organizations. Your circumstances may be such that they can make Kalydeco very affordable. You should also check with Vertex’s GPS program. You CF doctor will have to register you with Vertex before they’ll talk with you, but they can give you some advice. They also provide assistance under some circumstances.

Hopefully in the near future there will be a drug that provides the help for everyone with CF like Kalydeco has for many us us.

Good Luck!

 

[Cyster2]

I have that same mutation. Just started 4 weeks ago. So far going very well. No side effects. Increased oxygen saturation and decreased sputum. I go clinic in a week, so I'll see what FEV1 is at. Good luck! Hope it works well for you.

 

[CFwarrior86]

Thats wonderful your having such great success with it, and that you havent had any side effects
Ive been talking with Vertex and im still waiting on prior authorization. My case worker is saying my Medicaid was denied due to me having another insurance company, meaning my primary insurance Medicare parts A and B, Im guessing, which I have through SSA. ?? Not sure exactly whats going on but my case worker says it should all be worked out soon.
Good Luck at your clinic visit... please let me know what your FEV1 is! Thanks for your feedback

 

[LunaFaith]

between Medicare and Medicaid I only have a $3 copay for my Kalydeco

 

[rtorres25]

Kalydeco!

I have the mutation 2789+5g<-A, which is one of the mutations currently FDA approved with Kalydeco. I got a call from my doctor with the wonderful news and went in to fill out the paperwork and should be expecting the medicine anytime now!
Im curious as to what effects should I expect from this medicine? both good and bad. how long after the paperwork was filled out did it take to take to receive this medicine? if you have Medicare through Social Security, did it pay for the medicine completley? any information is greatly appreciated! Thanks

I got my Rx early June and actually received meds mid-July. (the delay was due to private insurance approval and copay assistance from Vertex took a little while to set up). I can't even believe the difference it has made. My sinuses were clearer than ever with the first dose. My sputum is almost non-existent and very clear! I've had 1 flare-up since starting Kalydeco. This consisted of a low-grade fever for a few days. I took 10 days of Bactrim and I feel great again! I go to my regular checkup later this month. I can't wait to see my new numbers! Good Luck!

PS They tell you to eat a fat containing food with each dose. Do this, b/c I didn't a couple of times, and within 2 hours I was very nauseous. That's the only side effect I've had.

 

[MissMe]

Hi! I would love to read more updates on people with residual function splice mutations on Kalydeco! I have a really rare residual function splice mutation, 4005+2T-c that would likely respond to a potentiator but since it's so rare it has never been included in any trial. I live in Sweden where we are still struggling to convince reimbursement agencies to fund Orkambi, so I am only trying to make the loooong wait more bearable until I can convince my doctors to give me an off label prescription or until the FDA or EMA agree to treat all residuals. Also, I think that real world experiences from more and more residuals on Kalydeco could have an impact on label expansion. My other mutation is a nonsense so no hope there in a near future.

 

[Nell]

Hello missme, we are seeing excellent results for people with residual function splice mutations with Indrepta and TauriNAC. I think one of the moderators on this site uses them as well. Worth a try since they are safe and affordable and have give so many patients double digit lung function increases and other health benefits. Tim Wooten wrote a review of Indrepta and TauriNAC on the blog page of this site that provides a link for more information. There is an Indrepta version for nonsense mutations so you may do very well on Indrepta C. We ship to Sweden

 

[alicegray]

I’ve never considered looking for other health insurance since mine is provided through my wife’s ex-employer. It’s really great in terms of cost and most coverage. Also, I’m not sure if there are any decent “Medicare” health plans that would provide better all-around coverage, including for Kalydeco.

 

[bichngoc94]

What happens if I miss a dose (Kalydeco)?

 

[stephen]

For me, nothing. I've intentionally tried skipping doses a number of times. It takes missing three doses before I begin to notice changes. Then, a productive cough starts to reappear, producing thick sticky mucus. Once the drug is resumed, it's only hours before the mucus thins and the cough begins to disappear.

I suspect that everyone taking Kalydeco/Symdeko has in reality "skipped" doses. Information I gotten from multiple sources, and my actual experiences, indicate that unless fat is consumed within a short time of taking the pill, the pill is USELESS - at least for me.