I mentioned in my previous post on my experiments with cystagon that I was going to try Orkambi, the drug designed to correct the CFTR channels in the cells of CF people with two deltaF508 mutations. Well, I did try it. And I'm not on it now. That should give you a hint of my general take on the whole experience. I'm back on cystagon and plan to stay on it indefinitely, or until Vertex comes up with a better drug for me to try. First, I'll give you a little summary of what it is and what it did for (or to) me, and then I will discuss the significance of its pharmacology.
I have been experimenting with Cystagon for about 5 months, and since I'll be going off of it to start Orkambi soon, I figured I should write a post on my experiences. Overall, Cystagon was incredibly helpful to me! In the early stages, it allowed me to feel well enough to travel (which has become very difficult for me these last few years) to see family in nearby states. It also has cut down my total mucus load so much that my recent hospitalization was much more successful because the antibiotics could work better and more quickly. I did experience side effects, but they were mild enough to tolerate, especially given the benefits. I want to write this post to encourage other CFers to try it (with caution and a physician's consent), especially those who have a deltaF508 mutation or those who cannot get access to Orkambi. It is a promising drug that I believe will be used more often in the future with CF (formulated for our specific needs) and for those of you who, like me, need something right now to keep your lung functions stable or high enough until a more effective drug comes around.
Mica is a clinical herbalist specializing in cystic fibrosis, severe respiratory diseases, nutrition and digestion, diabetes and blood sugar disregulation, immune disregulation, and much more. Through their own personal experiences with chronic illness, they are passionate about empowering people to take charge of their own health with natural, holistic, and integrative approaches. Please ask questions or share what's worked for you!
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