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Here is Vertex's press release from the proof of concept study for residual function mutations: http://investors.vrtx.com/releasedetail.cfm?ReleaseID=852372

Aboveallislove-Yes, I will mention to my doctor about writing up a case study to be published. I have a sweat test scheduled for the beginning of December. I have absolutely no doubt that these results will further support the use of Kalydeco for my mutation/residual mutations. I’ll be sure to...

Well I have an update! It’s a long one. My doctor attended the NACFC and spoke to other doctors about their experiences with off label Kalydeco use for residual function mutations. After hearing many success stories, he decided to prescribe it for me. He was cautiously optimistic that it would...

Well I have an update! It’s a long one. My doctor attended the NACFC and spoke to other doctors about their experiences with off label Kalydeco use for residual function mutations. After hearing many success stories, he decided to prescribe it for me. He was cautiously optimistic that it would...

Yes, your dose is a reasonable one. The CFF now recommends daily dosing of Tobramycin at 10mg/kg per day. That would be about 770 mg for you. Here’s a great article by the CFF that offers explanations to their recommendations for treatments of pulmonary exacerbations...

Hi Autumn, Martha replied already, but thank you so much for your offer. I'll let you know how it goes. Fingers crossed. Take care, Jeannine

Martha- I just sent you a PM. I was wondering if you could help me regarding the information you provided insurance company while seeking approval for Kalydeco for residual function mutations. Thank you!

I don't know of any blogs, but here is a good summary of what's on the horizon with Vertex: http://www.wearabletechworld.com/news/2014/10/09/8059592.htm Some of the information included in the article had already been released previously, but some of the information is new. Sounds promising!

This is from the inCourage manual: "Relative Contraindications: The decision to use the inCourage System for airway secretion clearance in thepresence of the conditions listed below requires careful consideration andassessment of the individual patient’s case." Osteoporosis is listed as...

I was wondering if anyone could recommend a counselor in the Phila./South Jersey area? I've been to a couple of therapists and am having a hard time finding someone that is a good fit. I would prefer someone that specializes in treating those with chronic illness. You can respond through this...

I’m so sorry that you are going through this. I am pancreatic sufficient and struggled with severe pancreatitis about 15 years ago. I’ve been through a lot with CF, but I can say without a doubt that my bouts of pancreatitis were the most challenging for me both mentally and physically. The...

Unfortunately I still haven't had the chance to try Kalydeco. I was enrolled in the combination VX-809/Kalydeco trial and went through the screening process, but then had an exacerbation during the screening period so I was no longer eligible to be on the study. By the time I could have...

I forgot to mention that I am on Vitamin K(Mephyton)--5mg (prescription strength) everyday to help with clotting and hopefully keep hemoptysis at bay. The over the counter vitamin K is not enough to make much of a difference. Most OTC supplements come in 100mcg dosages. You would have to take...

I've had a lot of issues with hemoptysis over the years. I agree that it is very hard at times not to let your fear get the best of you. I had an embolization done a couple of years ago. I had the same experience that Epona described (great explanation). However, I did not have to get a...

Here's a website that allows you to input your mutation and it will give you statistics regarding that particular mutation: http://www.cftr2.org I hope that helps answer any questions you have.

You may want to ask your doc about your son trying Spireva. It's supposed to help with air trapping (hyperinflation) and really helps with increasing exercise tolerance. It has made a big difference for me. I'm just not sure if it is normally used in children. Hope you find some answers.

So sorry Autumn. I know how disappointed you must be. Make sure you ask the nurse involved with clinical trials at your clinic to notify you as soon as there is a new vertex study that is enrolling. The clinicaltrials.gov site isn't always up to date. I'll be sure to post if I learn of any up...

I was supposed to participate in the Denver trial back in January. Unfortunately things didn't work out because I would not have been able to take hypertonic saline during the trial. HTS does wonders for me, so I had to back out of study. They may have modified the study so that you can still...

My glucose tolerance test came back slightly abnormal. My fasting was normal at 78, 1 hour post was 211, 2 hour post 164. My HbA1C is 5.7. These are in the "pre-diabetic" range. I will be going to an endocrinologist who has experience treating CFRD as soon as I can get an appointment. In the...

Sorry, I can't answer your question on the interaction of oil of oregano and pharmanac with levoquin and doxycycline. However, I did want to let you know that you should avoid any caffeine while taking levaquin. Levaquin will alter the metabolism of caffeine and allow it to build up in your...