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Type: Posts; User: Sonja35

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  1. I'm actually on my 2nd week of Trikafta and I...

    I'm actually on my 2nd week of Trikafta and I will tell you this... it IS the real deal! Within the 1st couple of days, I immediately felt a difference! I almost forgot what it was like to breathe...
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    Be careful not to rush into embolization after...

    Be careful not to rush into embolization after embolization cuz as you may or may not know, every time they do an embolization... it burns surrounding healthy tissues leaving big pockets for...
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    Michaelp397...

    Michaelp397 - They do have a 3.5% that I've had much better tolerance with. You should mention it to your doctor.
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    They do have a 3.5% that I do much better on than...

    They do have a 3.5% that I do much better on than the 7%. You should ask your doctor about it.
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    I have had acupuncture in the past by a real...

    I have had acupuncture in the past by a real Chinese medicine and herbal remedy practice. I've also had homeopathic remedies as well. Both worked very well & am currently looking into getting back...
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    For me, Orkambi made my breathing more...

    For me, Orkambi made my breathing more debilitated and Symdeko didn't really have any tremendously significant benefits. But, there's a new drug that's supposed to be on the rise to add to either...
  7. For me, I have to take a daily regimen of antacid...

    For me, I have to take a daily regimen of antacid like Nexium or Prilosec. I also have to take gas X on a regular basis. But to help with chronic constipation, I have to take Miralax to keep my...
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    I never knew there were so many different...

    I never knew there were so many different mutations that people can have. The way I always saw it is CF is CF and regardless if it effects people differently... eventually if effects the entire body!...
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    daily doses of Miralax followed by a lot of water...

    daily doses of Miralax followed by a lot of water is the best relief. I have bouts of bowel obstructions, but keeping up on the miralax helps to prevent them. good luck!
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