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THAT is exactly what I was looking for. A CFer who has had to step away from these drugs and what the "come down", if any, is like. I really appreciate your posting this. Thanks for taking the time.

So, do you have any experience with this process?

:mad::mad::mad::mad:A person at Vertex in the GPS program just royally dropped the ball with some financial stuff and I will be running out of Orkambi in 2 weeks time. Do any of you have any experience with or have themselves had to wean off of Orkambi and if so, how did you do it? Is it a...

Wow. Is that 70-80% drug coming out through Vertex or someone else? I heard that Abbvie was working on something in Europe along the same lines as Orkambi.....is that what you're talking about?

Anyone know how the effectiveness of Orkambi is quantified, BESIDES average lung function performance/improvement? Like how many defective proteins are being corrected/added on average per dosage session? 20%? 30%? Or is this unable to be quantified? Thanks.

I checked on healthcare.gov and they have the plans up and you can search which ones will give you Orkambi/Creon/etc. Here in GA, only 1 provider is covering my meds. Similar to your situation, I'm going to lose my CF center, as Kaiser (only 1 left with my meds), does not work with Emory...

I've been on it since March. I do recall some light streaking for the first few months. However, for me that was welcome replacement from the blood baths that would occasionally occur before it. If its just streaking and less than a teaspoon of blood, you should be fine. Monitor it for frequency...

Well. My insurance has just sent me a letter saying they are pulling out of GA and are not participating in the MarketPlace (Obamacare) anymore as of Jan 1 2017. This causes somewhat of a problem in that I just got on Orkambi in 2016 and now I don't know if any of the insurers that are left will...

Are you in GA? Also, they gave you trouble...did you get the medication finally?

Yea. I called the lovely Vertex GPS rep who couldn't/wouldn't answer anything. I believe on insurance he said, "That's changing all the time/varies, so I can't really comment or recommend anything...". BTW: So are many carriers not covering Orkambi yet? If so, how on earth will the precious...

Any Georgia residents on Orkambi via insurance? I am looking to sign up for Obamacare in a few months, so any experiences (bad/good) with GA carriers would be super helpful. Thanks!

Anyone experience any "side effects" from an extended and/or continous usage on anti-biotics? I know there are good bacteria throughout the body that are killed when one is on anti-biotics...especially in the stomach..so has anyone had a side effect as a direct result of that? Thanx. PS: How...

Anyone experience any "side effects" from an extended and/or continous usage on anti-biotics? I know there are good bacteria throughout the body that are killed when one is on anti-biotics...especially in the stomach..so has anyone had a side effect as a direct result of that? Thanx. PS: How...

Do you regularly use any of these uhm. 1st off. I am a he. Also, I was aware that crikit715 and myself were BOTH correct about the correlation between ethnicity and CF. There does seem to be a connection of some sort. The question was not the connection but rather asking what the nature of that...

Do you regularly use any of these uhm. 1st off. I am a he. Also, I was aware that crikit715 and myself were BOTH correct about the correlation between ethnicity and CF. There does seem to be a connection of some sort. The question was not the connection but rather asking what the nature of that...

Do you regularly use any of these uhm. 1st off. I am a he. Also, I was aware that crikit715 and myself were BOTH correct about the correlation between ethnicity and CF. There does seem to be a connection of some sort. The question was not the connection but rather asking what the nature of that...

Do you regularly use any of these that sounds correct..Are all mutations preceded by "Delta"?

Do you regularly use any of these that sounds correct..Are all mutations preceded by "Delta"?

Do you regularly use any of these that sounds correct..Are all mutations preceded by "Delta"?

Do you regularly use any of these As for the stomach stuff..I have always and currently do have issues maintaining weight. High fat or even moderate fat foods and meals have always required 5-6 higher dose pancreatic enzymes (Creon 25/Ultrase MT20,etc). The mutation I am not sure of..however...