Starting Kalydeco Today

[Sundown]

Hello all,
I have never posted on these boards but was prompted to do so by some interesting developments in my life--two weeks ago it was discovered that I possess the rare G551D mutation and was prescribed Kalydeco. I am 29 years old, but my mutation has always been "unknown". However, with Kalydeco hitting the market, my doctors decided to look further into my mutation; and they hit the jackpot.
Timeline of events:
Tested for mutation: March 13th
G551D identified: June 11th
Kalydeco prescribed: June 13th
Insurance approval: June 18th
Kalydeco received: June 29th (a note about Kalydeco: it must be signed for, and I was out of town for a week, which caused the delay in receiving)
First pill taken: 5:30pm central, June 29th

I will let everyone know how it goes and try to provide as much detail as possible.

PS. My co-pay is $15 per month.

Thanks!

 

[Sundown]

Updated: Starting Kalydeco Today

24 Hour Report:
It has been approximately 24 hours since my first dose of Kalydeco and I can report the following:
-I can feel the mucus rattling around like crazy
-I am bringing up mucus with extreme ease; in fact, simply clearing my throat seems to loosen it quite a bit
-I am keeping a cup beside me at my desk because I am bringing it up randomly without even trying
-The mucus that I cough up appears to be much thinner
*With the anticipation of this drug, I can't help but wonder if I'm imagining this (i.e., I want the drug to work so badly, that I'm convincing myself of immediate reactions...)

 

[sdelorenzo]

That is exciting news!!! Keep us informed on the changes you notice.
Sharon

 

[Sundown]

Thanks Sharon!
48 Hour Report:
-I have continued to bring up excessive amounts of mucus. I was at a movie this afternoon and had to get up twice to cough up globs of mucus; I wasn't coughing during the movie, and I'm not sick, but it just keeps loosening up
-I am having changes in my sinuses--more pressure and drainage. I can't tell if this is because of our recent weather changes, or if Kalydeco is causing them, but I have a little soreness under my eyes
-So far I have not noticed any change in appetite, weight or physical endurance; I assume those will come later
*I will post one more update tomorrow at the 72 hour mark, and then take a break for a couple of weeks

 

[baseballfrank]

Please keep the updates coming. it is so important to hear how you are doing. I think the daily updates are extremely beneficial. It's got to be therapeutic for you too. I am waiting and holding my breath for the 809/770 combo. I am 51 and have been waiting for this my whole life, so please keep us updated! good luck!

 

[JENNYC]

Wow!! Congratulations!! You did hit the jackpot!! Thanks so much for the updates <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sundown]

Thanks everyone! It really does help to keep a mini-journal about this experience. 72 Hour Report: Today has really leveled off; not as much activity. -My lungs feel very clear, but I'm still bringing up a little mucus here and there. One of the surprises has been the ease with which I've been able to bring up everything. -Sinus pressure is complete gone since yesterday and my nasal passages are perfectly clear. There has been some drainage, but it actually feels great. If I had to sum up the past three days, it would be like this: imagine when you're sick, and those first few days you take an antibiotic; you begin to cough up mucus, clear your lungs and feel better...now imagine that happening, except you're not sick. It's a new, exciting feeling. I really think this is the tip of the iceberg. I will give a weight, PFT, endurance, etc. report in a couple of weeks. In the meantime, let me know if you have any specific questions about the drug.

 

[Aboveallislove]

Thank you so much for the updates and please do post as often as you can; I can't tell you how uplifting it is to "see" a miracle with this disease and the hope it gives for us that other drugs will be able to give similar results for other mutations. If you know/learn what you cultured and then results of a culture post Kalydeco, that is one thing I'm really interested in too.

 

[Aboveallislove]

Thank you so much for the updates and please do post as often as you can; I can't tell you how uplifting it is to "see" a miracle with this disease and the hope it gives for us that other drugs will be able to give similar results for other mutations. If you know/learn what you cultured and then results of a culture post Kalydeco, that is one thing I'm really interested in too.

 

[rhonda21]

We all appreciate this info. My daughters mutation is unknown as of now but i hope sge is a candidate fir this med. She usnt sick often at 26 years old but she does have weight issues sinus issues and some coughing with very little mucous production.
She has not been hospitalized for 2 years. Cross fingers.

 

[CyrilCrodius]

One thing I'm very interested in is, did you notice anything in the amount of saliva in your mouth? I've been suspecting that in the end, how I always find some types of foods (meat, cake) too dry to eat might not be a whim, but a genuine lack of saliva.
Also, eye dryness and if you are a woman, down there... any difference?

 

[Sundown]

Hey everyone!

It has officially been 1 week since I took my first dose of Kalydeco. I can honestly say that I haven't felt this clear in a long time; when I do my vest, almost nothing comes up. I am not coughing during the day, and barely at all in the morning, which is my worst time.

One adverse affect: for a couple of days, it felt as though my lungs were sore. I'm not sure if this is a side affect of the drug. At first I thought maybe I had slept awkwardly or pulled a muscle, but thankfully it has since gone away.

Aboveallislove - I have a culture report pre-Kaly and will likely get one in a couple of weeks. Our reports are very detailed and include the bacteria and drug sensitivities as well. I will share that with you when I get it.

CyrilCrodius - I have not really noticed any change in saliva or eye dryness. Maybe that is something that will take some time to change, but so far, nothing. I am male, so I can't speak to that form of dryness.

I'll come back with an update in a week or two. Feel free to ask any questions; I'll do my best to answer.

 

[JENNYC]

Love, love, love to hear all of these wonderful things!!! I wish I could tell if it is helping my little one. I haven't noticed any change what so ever. But she is not a cougher, and she just got over a little bug that we were on Clinda for. But I am so happy for you. Keep us posted!!!

 

[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

 

[Lena Bean]

Do you mind me asking what insurance you have that your co-pay is only $15!? That seems so low for this new med. Not that I'm eligible to take it anyways. Just curious, for the future.