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I was started on it for my increased wheezing and was on it for about 6 weeks and my shortness of breath had become much worse. I didn't really connect it to Q-var at first because I had been having problems even before I started it. When I went back to clinic my PFTs were at an all time low...

I just copied and pasted my response to First Exacerbation thread. It may have some relevance for you. However I have had a lot of problems even without an exacerbation, so I'm not sure if it will be helpful. This has been my experience with increased inflammation over the last 18 months...

I'm sorry you're having such a difficult time. My FEV1 has been running about 48% and I do have shortness of breath with some activities, esp. walking up a lot of steps, or walking up any incline. There are some days that I'm out of breath just walking my dog. It seems to vary greatly for me...

That's very encouraging news Jenny. I'm so happy for her. It's a shame your doctor isn't on board. I know how important it is to have a good relationship with your doctor. What insurance do you have? Did it have to go through an appeal process? I will talk to my doctor and get his thoughts on...

I was very hopeful as I did research and discovered that my mutation in a class IV conductance mutation and since I have CFTR and the cell surface that Kalydeco should be effective. However, as I did further research, I was disappointed as the in-vitro studies of my mutation,r334w,did not show...

I am one of the 114. I also have the combination DF508 and R334W. I'm 41, was diagnosed at age 7 with a sweat chloride of 110, FEV1 is 48%, colonized with MRSA and pseudomonas, pancreatic sufficient, history of severe pancreatitis. For the past year and a half, I've been struggling a lot with...

Hi Steve, Could you please give me any information on the mutation combination of R334w and DF508? How common is it and what is the typical disease progression. Thanks, Jeannine