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Not everyone's purge begins right away. When I took Symdeko and Orkambi, it was a couple of weeks before my purge period started.

With one copy of the DF508 you should be eligible. Here's a link to the med site for more information. https://www.trikafta.com/

Chaos...I'm so glad to hear that you're pfts are amazing and that you're willing to give Trikafta a shot. Can I ask what symptoms you were experiencing with the other two modulators? Just curious because, I may have some insight to help calm your nerves.

So CF has to start somewhere. I am the first and only one in my family who has it. My parents are the only carriers in their family (including extended). What this means is that he doesn't have CF, but he carries a mutated gene for CF. The report you got back just showed what gene got mutated...

Before starting Orkambi I was at 46% and before Symdeko I was at 58%. I am now at 65% and still waiting for insurance to approval. I completely understand being terrified, but in my experience there were breaks of hours or days before another huge purge hit. But once you see what comes up, I...

For me it took me a couple of days for me to start feeling the changes, but it took me a couple months to look back and realize "wow I feel better". I noticed my body wanted to cough, but I didn't actually need to cough and that was weird. I think I went though a period we're I just coughed for...

I've never had an issue with enzymes and reflux, however, acid reflux can become a much bigger issue when it comes to lung health. If gets out of hand and uncontrolled it can get worse and lead to more frequent IV antibiotics. The acid can get into the lungs. Make sure you bring this up to his...

So the amount you are getting up is probably from both the infection and from the Trikafta. I've been seeing lately that people who are taking it are bring up a ridiculous amount of old junk. Someone had to ask their doctor about the color of the stuff they were bring up because they've never...

Insurance covered it. I had already hit my out of pocket. I got it when it first became available.

The article I read said pharmacies will begin having it 2 weeks from when the FDA approved it.

I'm a DDF508 as well and while I got some benefit from Orkambi, I still didn't feel better a whole lot better on it. I was on Orkambi for about two and a half years. I was switched over to Symdeko which I can absolutely tell is making me better. My lung functions did get better on Orkambi, but...

Incorrect. It's better than Orkambi. My doctors and transplant team kinda explained like this. The gates that let the sodium in in Cfers are hunched over and broken down. A med like Orkambi, make those gates straighter but are still a little hunched over. Trikafta makes those gates stand...

If genetic screening came back positive, then he has CF. Sweat Tests are a bit of a challenge as some CF patients have had negative results on sweat tests. When it comes to enzymes, they will help him gain weight, however GI issues may always be an issue despite enzymes. Making sure he gets...

I have taken Orkambi and was switched over to Symdeko once it became available. I was switched over because of the better results that Symdeko had, but did fine on Orkambi. I went through two purge periods starting both drugs, however the first one was the worst because it was the first time I...

Elexcaftor is the third drug in the triple combo

Some people love the Vest and it works well for them. For others , like me, I don't feel it does enough or gets to the areas I feel are clogged. I would recommend getting a Vibralung. It's quicker, a lot easier to use, you can do meds with it running, and it's able to work your airways from the...

I'm so excited!! I hope everyone is able to get this and improve on it!!

Miralax can help, and I know a lot of people do about about 2 cap fulls twice a day. However, you have to be really careful with it. If the powder mixed isn't completely dissolved, that can create a sludge that's going to back him up anyways. I had this issue, so I've gone to doing a jug of...

I have a Bed Wedge that I sleep on that helps when I cough. It's Brookstone brand (https://www.brookstone.com/pd/4-in-1-bed-wedge-pillow/633859p.html ) but I bought it at Bed Bath and Beyond. It might help a little bit to help keep you propped up to sleep. I personally get up when I start...

So just wanted to give you an FYI. I take Symdeko and actigal too. I and some other CFers have had increased liver test being on it. We now have been instructed to only take the morning dose of Symdeko. The night time dose is basically just a booster of ivacaftor. Doctors and researchers have...