Recent content by liveitup

Happy Birthday Girl!!!

So, I am 36 years old. I had not been on digestive enzymes since I was about 16 years old. My cf dr. just prescribed enzymes recently - after I started Orkambi. I am wondering if it is because of the "must be taken with ...fat, etc." I've been taking the enzymes. I never had bowel issues...

Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi for about 2 months now, and I have gained about 13 lbs. I don't want to gain any more weight...

Wonderful!!! Good luck :)

I'm sorry to hear that the Orkambi has been rough for many of you. I started taking Orkambi on the 3rd of September. So far, I feel great! I'm definitely not as salty, and I don't even have a cough at all. I was very tired the first couple days and had some very minimal chest tightness. It...

wonderful!!!! Best wishes!

That is so frustrating Imported!!! I am going to be praying for YOU and that this DOES WORK for you!!! I am hoping and praying that it already is! Will be waiting for GOOD NEWS!!!

Thanks for your responses. The other thing I notice (and still am noticing) my mucus (ewe - sorry!!!) feels like I just got finished my Hypertontic saline neb. it seems "super flowY" (I'm sure that isn't even a real word!) OH YES, and I was so tired yesterday. That could be for many reasons...

That is awesome!!! Is this your first half? I only ever ran one half marathon, and it was the best race of my life (1:38:01 - OH YEAH!!!)! I think I was 31 when I ran it. Training is going to make your pft's go up!!!! I'm 36 :), and I feel better than ever!

Hi Everyone! I started Orkambi last night. I took my 3rd dose tonight. So far, just a little cough and maybe the tiniest chest tightness. When did the "Hell week" start for you all? I'm scared, and it almost prevented me from starting! I'm 36 and FEV is 87%. Thanks! 36 F/married w/3...

Congratulations!!!! Yes, EAT!!!! Breastfeeding really does take a toll, but it is so worth it :)

I grew up in PA, but I live in Delaware now....Arizona in between :)

I'm sorry...Accredo is our specialty as well, hence the "nightmare." Good luck and let me know how it goes!

Thanks! I was trying to do the thumbs up...not down! I'm sure our insurance company will make us use our mail order specialty pharmacy. Working with them is always a nightmare!!!!

Where will we be able to have our Orkambi scripts filled? I haven't gotten mine yet. Will they be like Tobi and Pulmozyme where you can have them filled at any pharmacy (or specialty pharmacy), or will it be like Cayston where only a few pharmacies are authorized to distribute? Thanks...