questions about therapies for g551ds, who are on Kalydeco

[echolaura]

My daughter, (an adult now) has been on Kaly for 3 months. Her numbers are BARELY better, and she doesn't admit to feeling any different on the drug. She has decided on her own, to stop using Pulmozyme, Albuterol and Advair. Is anybody willing to fess up and tell me their own experiences, have you done this and had an exacerbation? Done it, and it hasn't mattered? Her doctor at this point has recommended she continue all therapies until further notice. Thanks in advance for your stories...

 

[BikerEd]

Okay my numbers went up, no giagntic but I was sick before I satrted and did home treatment went from fev1 36 to 51 after that started Klaydeco I'm now at 58. I've gome from plumo twice a day to once, and that is now the only neb I do, no more tobi or albutral. I still do advair, spriva and a rescue inhailer as needed. I still do enzymes but I also went from 146lbs to almost 170lbs. I couldn't tell you if I feel better or not but I can tell you I notice when I do something that I could do before or a lack of effort it takes. (Sorry for any misspellings or goofy words I'm on my phone) good luck

Ed

 

[Aboveallislove]

Laura, I know that some folks who are getting great improvement in things (Sweat chloride levels, sinus problems, etc. are cutting out some treatments, but by phases.) I'm so sorry---you must be worried and just not sure what to do.

Ed, do you mind me asking if your eating changed when you saw the increase in weight?

 

[BikerEd]

If you mean by change, my appetite increased, yes. However I'm still eating what I did before, but I don't need boost or zone bars anymore but I try to stick to high proteins moderate to slightly high fats, and I love carbs. So meat potato's with butter and cheese! If you looking for something more specifc feel free to email me

 

[Tom]

My son has stopped pulmozyme, hts, vest and has drastically reduced his enzymes while continuing to gain weight. All of these changes have been evaluated and approved by his cf docs. This happened over a course of 3 months. No exacerbations and cultures have improved.

 

[CyrilCrodius]

I totally understand that she would have very little incentive to continue her other therapies if she can simply take a pill to replace them all and is fine the way she is. However, adding the therapies back are likely to speed up the improvements.

 

[bigstar]

Guys sorry if i kinda hijack the post but has anyone had any improvement on PA? Anyone culturing it before but not now? Or lower levels? Im just too curious!

 

[cindylou]

I have been on Kalydeco since early April, and I have to say, I can't EVER see myself stopping any of my treatments. My health is definitely doing better than it was, but I still need 2-3 treatments a day to make it through the day. My doctors have said I definitely shouldn't consider stopping anything right now, anyway.

I am severely pancreatic insufficient (I take about 8 zenpep 20s with each meal - and would take more if I could!), and I suspect that the intensive damage to my pancreas has made it so that I'm not absorbing the Kalydeco quite as well as some, hence my not-quite-as-stellar results. However, I've still seen LOTS of amazing improvements, and I'm very grateful!

 

[anthonyb22]

I have been on Kalydeco since march. At first i noticed less cough. Then i noticed the weight gain. Within 3 months of being on it i gained 10lbs! I cant say i feel like a new person. But my pft's did jump from 103% to 110% in those 3 months as well. Between working overnight and going to school in the daytime along with every thing else a normal person has to do, its hard to find time for vest, pulmozyne, etc. But i try doing them a few times a week. Sometimes more, sometimes less. I havent noticed whether or not the lack there of makes a difference in my PFT's. I also find time to work out a few times a week(cardio, weight lifting)

 

[samaruba]

I've read a newspaper article, where the guy with CF taking Kalydeco says that at first he didn't notice a big difference but when he started taking it with very fatty foods, like lots of bacon, he improved. That might help?

 

[cindylou]

I have taken it with fatty foods since I started, but like I said, I don't absorb either fat or nutrients/meds that well because of my very damaged pancreas, so I'm guessing it's probably just not quite as effective. But honestly, I never expected Kalydeco to get me off my other meds, and I'm SO happy with the results I HAVE seen!