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I know then when I take vanco I often get the 'red man syndrome' if it is infused to quickly. But that would happen immediately. And when i lowered the infusion rate it would go away. I don't know much, but I would probably get a hold of your doctor because it might be an allergic reaction. I...

Hi All. Fred Van Goor gave a presentation at ECFS in Dublin in June entitled "<span>Ivacaftor Potentiates Mutant CFTR Forms Associated with Residual CFTR Function." For those that have read my previous post would know that my CF team said that Van Goor was soon going to publish a paper...

That is great news Annalisa! Thanks for sharing! If you would not mind telling me, what meeting were you at? Was it a conference?

GenH- Thank you for the post, that was really helpful! DrRoe - I saw that article also, I when I asked my CF clinic if this was the article they were referring to she said that it was not. She said that it will be an article specifically dealing with other classes. Who knows...

@GenH- Thanks for the reply, Yes those are precisely what I was referring to. I had originally thought that one slide was a strong piece of evidence to get the rx, but it now might be the opposite. Especially given the registry data and the fact that there are twice as many known 347P's than...

@saveferris - Thanks for the reply. I totally agree with you, I do not see the harm in at least prescribing the med. I am not sure, but I think that part of my problem is that I belong to an hmo. They have told me that my insurance (their employer) definitely would not allow it off label without...

Hi all, I am new to the site but look forward to being a part of the cf community that has formed here. I am a 34 year old male with the DF508 and R347P and currently in the early stages of transplant evaluation. I have been trying to get my center to prescribe Kalydeco but have been...