Search results

I think you mean the aminoglycoside studies (e.g. gentamicin), they also act on the Stop codon similar to PTC124 (Ataluren)...

Yep, Triples15, looks like you're cured! You just won the Kalydeco lottery. Lucky sod!

PJammer, you legend, this is the most useful post I've seen in years. Loads of info on the most common mutations. Unfortunately for me, it proves Kalydeco monotherapy has no effect my V520F mutation (DF508/V520F). But hey, now i don't feel so bad, not being able to get on the drug! In fact...

New information shows kalydeco/ivacaftor monotherapy has no effect on V520F. Which sucks...

I think this song is inspirational: Don't you worry child by Swedish House Mafia. Its dance music though so might not be to your taste, lyrics are great though... "My father said, don't you worry, don't you worry child, see heaven's got a plan for you"

Hi Mallory, Here's a couple of suggestions from my experience. 1) I've had a similar experience with recurring chest infections, taking my standard IVs for 2 weeks, then lasting 2 or 3 weeks before needing to go back on IVs again. My doctors seem to be stuck in a grind of ONLY using their...

6.1 percent doesn't mean much to someone with maybe 80% FEV1. But to someone at 30%, it might mean moving off the transplant list and stopping 24/7 oxygen. I hover between 35% and 40%, so I'll take a 6,1% boost everyday thanks! Its likely kalydeco slows down disease progression too so you have...

DeltaF508 is a mutation that is halted by cell quality control and the majority of the protein never makes it to the cell membrane where it is supposed to function. So DF508 mutants needs a drug to force them past cell quality control and on towards the cell membrane. This is what VX809 does...

The guy in charge of in vitro CFTR testing at vertex (Kalydeco) is Fredrick Van Goor (Email:fredrick_vangoor@sd.vrtx.com). He would know if there was any evidence of Kalydeco working in V520F.

Here are a couple of publications that state V520F is a class III mutation: http://www.ncbi.nlm.nih.gov/pubmed/11180668 http://www.ncbi.nlm.nih.gov/pubmed/19403164 Seeing as there does not appear to be any definitive research published on V520F, I'm guessing it has been assigned to class III...

Wow, a lot of questions: Here goes... I cultured regular Pseudomonas aeruginosa at age 10, hence the first round of IV antibiotics. Previous to that I had cultured staph aureus, treated by oral antibiotics. These days I usually culture 1 or 2 strains of mucoid P.aeruginosa. (I don't know if I...

Thanks Bill, it's interesting kalydeco doesn't have an effect on PI. Maybe the secretory cells and ducts and what-not are smashed beyond repair, so there's nothing for it to work with. Hey, as long as it does something in my lungs, I'll be happy.

Hi, Here is one perspective from a V520F-er! I'm a 36yo male and have DF508/V520F. I have about 35-40% lung function now, but was very well all through childhood and teenage years, with first IV's at age 10 and 2 or 3 per year after that. I do cough up a hell of a lot phlegm per day now though...

I've taken Meropenem on and off for about 10 years. The last time I took it, I got a pain (6/10) in lower back and then really bad chills/temperature, every time I took a dose. I ended up having to take two paracetamol before each dose to make it to the end of the treatment. Weird. Must be my...

I get night sweats too on and off. It used to be around the time I needed to go on IV's. But these days, it can come and go at will. I think its to do with a low grade fever caused by the ever present infection. Some things that work for me: 1. Paracetamol before bed. 2. Sleeping with very...

Sometimes, the smelly bacteria can actually be gram positive bugs. Whereas, the usual Psudomonas and staph are all gram negative. So, you could try Flagyl (metronidazole). Its worked for me, getting rid of smelly breath. Strictly no alcohol when you're on this one though...

Sometimes, the smelly bacteria can actually be gram positive bugs. Whereas, the usual Psudomonas and staph are all gram negative. So, you could try Flagyl (metronidazole). Its worked for me, getting rid of smelly breath. Strictly no alcohol when you're on this one though...

I struggled along with cannulas into my arms, hands and by the end, even my feet, for about 20 years of IVs. I had PICCs too, but kept resisting getting a port put in. I think I was afraid of getting one put in and had loads of excuses, like it would get in the way of surfing or playing soccer...

I struggled along with cannulas into my arms, hands and by the end, even my feet, for about 20 years of IVs. I had PICCs too, but kept resisting getting a port put in. I think I was afraid of getting one put in and had loads of excuses, like it would get in the way of surfing or playing soccer...

Good news I think for those of us with gating mutations other than G551D. http://www.youtube.com/watch?v=xguSP9-HbSw http://www.youtube.com/watch?v=YkDUbvFpNsA Basically, saying because most other gating mutations are so rare, it won't be possible to carry out clinical trials, and that the FDA...