NoExcuses

Thanks for the update! Sounds like Kalydeco is m...

2012-04-20T08:43:10.738-04:00

Thanks for the update! Sounds like Kalydeco is making a difference for you and that's great. We all know that FEV1 can flucuate and it is just one part of the big picture. If you are feeling better, that's all that matters. :) Wishing you all the best!

CHOP in Philadelphia is now doing experiments with...

2012-04-20T02:02:46.123-04:00

CHOP in Philadelphia is now doing experiments with Kaly in other non-gating mutations. ;)

@Woody, great news! all patients with G551D that m...

2012-04-18T19:37:59.535-04:00

@Woody, great news! all patients with G551D that make under $150k in the US can get access to Kaly per assistance from the manufacturer and the CF Foundation.

So not only will everyone have access to the drug, but - those who don't have G551D have access where we are seeing clinical benefit.

I'm willing to bet that those without G551D will have access to the drug in the UK.

Your meter seems to be quite good (which one is it...

2012-04-18T13:21:56.506-04:00

Your meter seems to be quite good (which one is it, btw? I'm looking for one...) A difference of only .03L in readings, especially for adult capacity lungs- is pretty insignificant in my opinion. If you ever did pursue getting a sweat test in future, it would be interesting to compare against ANY past ones you've had, since it's highly unlikely your sweat chloride level has changed all that much since you had it done way back when.

Wishing the very best. I know how hard you work to maintain your health and I hope this continues to be, at the very least, another tool to help enable everything else you are doing to work better. :)

As a lefty socialist from the UK I am going to res...

2012-04-18T11:41:34.665-04:00

As a lefty socialist from the UK I am going to resist the urge to respond in a Michael Moore style and just hope that everyone wjho can benefit has access to Kalydeco. (Kalydeco is currently under review by the NHS while we wait for the European license to come through next month) ;-)

Anyway, thanks for the update.

Hi Harriett. I did PFTs on Monday, April 9 at my c...

2012-04-16T22:16:26.448-04:00

Hi Harriett. I did PFTs on Monday, April 9 at my clinic and then came home to compare to my home meter - the FEV1s were 0.03 apart. So although you are correct, I didn't have the opportunity to take a look at my FEV1 on the same machine a few weeks ago because I didn't have a clinic appointment, I do believe my home machine correlates pretty closely to my clinic machine. But you certainly make a very valid point and I will continue to update my FEV1.

I did not do a sweat test prior - unfortunately I felt lucky to just get an Rx and my doc wasn't too keen on doing one. I didn't want to push hard for it because I had already pushed quite a bit just to get Kaly. You are 100% correct about changes in CFTR function - fortunately others are doing this during their off label Kaly trials so we will see what they come up with.

I definitely appreciate what you are you saying about treatments - for me, they are essential.

Anyway, I am excited for my results but I definitely understand they were anything but scientific. I did the best I could, but there is no question that not using the same meter as you correctly pointed out and not doing a pre and post sweat test makes my findings even more subjective. Luckily for me, I get to make my own decisions about Kaly. Ha :)So I only have to prove it works to myself.

I hope others keep sharing their experiences. Thanks again for your questions and I will continue to post!

A couple questions out of curiosity~ were your sta...

2012-04-16T12:21:59.728-04:00

A couple questions out of curiosity~ were your starting fev1 and the one reflecting the 11% increase taken on the same meter? Because that is truly impressive and I am so happy for you. I am also wondering if you had a sweat test done prior to starting Kalydeco and if you'll have a repeat test done~ because even if treating your CFRD muddies the waters when it comes to further improvements in your pulmonary health, it certainly wouldn't affect changes in your CFTR function. I am really curious about this aspect of it.

I notice you say you saw these improvements without making any changes to your diet, exercise or meds and I am SURE that helps. Working with the mechanism of action of the med and helping to clear out whatever it's breaking up just makes more sense than dropping stuff like I see a lot of other references to.

I hope you continue to do well and insurance keeps covering it.

Woah, impressive results! I do have G551D and have...

2012-04-15T14:54:13.874-04:00

Woah, impressive results! I do have G551D and have been on Kalydeco for 1.5 weeks. Thus far, I definitely haven't hit the "feeling awesome" part of the drug. I'm still coughing up a lot of crud and feeling generally not so great. The huge thing I have noticed, though, is that coughing it up has become WAY easier!

The happiness formula? hmmmm... I don't recall...

2012-03-26T21:11:27.838-04:00

The happiness formula? hmmmm... I don't recall that. Please share what you are talking about

The information you shared is very interesting.Thi...

2012-03-26T04:05:11.623-04:00

The information you shared is very interesting.This site is excellent,I am impress with your ideas. Thank you for sharing the happiness formula. To be happier, I need to boost my good feelings, put a stop to my bad feelings, and pursue my right feelings. | provigil

I just wandered by after seeing someone post about...

2012-03-24T23:18:26.490-04:00

I just wandered by after seeing someone post about your Kalydeco experiences. I'd actually really love to know the feminine side effect you had - I'm about to start Kalydeco (for G551D) and I'm REALLY hoping that it could potentially help some of my hormonal issues as it takes a little of the stress off my body. So, I'm very curious as to what you experienced. ;) I couldn't find your e-mail, but feel free to e-mail me (beingcindybaldwin AT gmail DOT com)! And good luck!!! I can't wait to hear more.

Thank you!

2012-03-19T11:59:03.919-04:00

Thank you!

I will definitely update when I've been on the...

2012-03-19T10:16:20.244-04:00

I will definitely update when I've been on the drug for a few weeks - I want to make sure I give the most accurate and data-filled update :)

Hi! Just wondering how things are going with Kaly...

2012-03-19T02:22:15.634-04:00

Hi! Just wondering how things are going with Kalydeco since your last post.

Mention to who? I have DF508..... I am not DF508 ...

2012-03-17T16:50:45.412-04:00

Mention to who?

I have DF508..... I am not DF508 :)

Did you mention that you are D508?

2012-03-17T16:33:50.550-04:00

Did you mention that you are D508?

Amy! Jackie here (your cysticfibrosis.com friend)...

2012-03-14T21:58:35.414-04:00

Amy! Jackie here (your cysticfibrosis.com friend) and I'm interested in every last detail- how exciting! PM me on the cf site concerning the last bullet if you have time :) Also, I"ll be interested to hear how this may or may not affect lung bleeds.....

I am also very interested in how this goes for you...

2012-03-14T12:09:02.614-04:00

I am also very interested in how this goes for you - glad your doctor is open to rx'ing it for you. Please keep us updated!!!

Very interested about how this goes. Please keep u...

2012-03-14T08:40:59.065-04:00

Very interested about how this goes. Please keep us updated. I am still waiting for Kalydeco to become available in the UK.

Wow, so exciting, Amy.....thanks for blogging abou...

2012-03-10T19:24:43.080-05:00

Wow, so exciting, Amy.....thanks for blogging about this. I'll be very curious to hear if it helps you at all. GOOD LUCK!!!!!

I agree - I really do believe that Magnesium was d...

2012-01-31T16:38:29.376-05:00

I agree - I really do believe that Magnesium was doing something. My Cyster Mandy is an amazingly smart woman and showed me this information. Keep me posted on how things go with you.

But I agree that 4 months of non MDRPA is awesome - haven't had that in 10+ years. I don't think it's a coincidence.

PS I think VX-661 is the holy grail. I'm not betting on 809 http://www.vrtx.com/current-projects/drug-candidates/pipeline.html

Thanks! That helps. Even thought MDRPA showed up...

2012-01-31T16:33:59.915-05:00

Thanks! That helps. Even thought MDRPA showed up again, it still shows that it might be helping. From what I understand, sometimes the cultures will test positive, sometimes negative. Four in a row is a pretty good step, though. Also, it's a good day today. VX-770 was FDA approved! Here's hoping that the 809 and 770 trials continue to go well!

Full disclosure - after 4 consecutive sputum cultu...

2012-01-30T23:02:08.673-05:00

Full disclosure - after 4 consecutive sputum cultures with non MDRPA, my sputum culture in the hospital came back with MDRPA. So take that with a grain of salt...but of course I'll keep you guys updated :) Also, I realize that I'm not taking the idea dose - I've been taking 400mg and I should ideally take 800mg, so I'll up my dose. My brand is Bluebonnet - I bought it at a local pharmacy called Pharmaca. Hope that helps

I have gotten the OK from my MD to take the Chilat...

2012-01-27T16:35:42.560-05:00

I have gotten the OK from my MD to take the Chilated Mag. I have one more question, just to be on the safe side and to minimize variables. What is the brand you are taking? Since the supplements in the US are not regulated, I figure this is a good question. Thanks, again.

I am taking 400mg of the Chilated Magnesium. I tak...

2012-01-24T15:45:47.956-05:00

I am taking 400mg of the Chilated Magnesium. I take it with meals & enzymes to ensure good digestion, but make sure not to take it with some oral abx. Read your abx PI's for the most accurate info. :) Keep me posted on how you do!