Recent content by kosdancer

  1. K

    Acne increase on Trikafta

    I definitely had horrible acne when I started, worse maybe than when I was a teen (I'm 26, female). I switched my birth control partly because of that and partly because of cycle issues and it has completely cleared as have my cycle issues, so I do think there's a hormone thing that could be...
  2. K

    When will pharmacies begin carrying Tricafta?

    Pharmacies have it! The hold up now is insurance. I know FOundationCare is shipping, and I believe Accredo is as well.
  3. K

    Trikafta Q&A, Experiences, etc.

    I was in the phase 2 trial for Trikafta and have taken both Orkambi and Symdeko. I had such a different experience starting Trikafta than the other two that I'll just focus on Trikafta. I absolutely had a mucus purge. It started about four hours after the first dose, and lasted for the whole...
  4. K

    Impaired glucose tolerance & insulin

    Hi everyone, Has anyone out there started on insulin while still in the impaired glucose tolerance phase? I had my annual OGTT a few weeks ago and came out as IGT and we're now testing at home for a few weeks and I'm routinely seeing numbers in that IGT range. I also have started losing weight...
  5. K

    any ideas on how long airway clearance systems last ?

    Woah. Maybe I've been lucky, but my original vest just turned 18 and is still kicking. I don't use it much - it's at my parents' - but I've never had any issues. It was used heavily for 11 years. My current vest is about 7 and a half and is fine (SmartVest) as well.
  6. K

    Increasing Lung Function

    I'm so sorry to hear that! I know it's terrifying to lose so much so quickly. Some ideas... I assume you already had/have had IV antibiotics and either are still on them or have stopped them for now? Extra treatments - not sure how many times a day you're already doing airway clearance, but...
  7. K

    Adults with CF what are your jobs?

    I'm a PhD student in biochemistry with the aim of working in an industry job after. My main concerns when picking a career path were that it wasn't physically demanding and that it will have steady health insurance. An industry job won't exactly be low-stress, but I've greatly benefitted from...
  8. K

    Waiting On A Sweat Test, Support...

    Hello, It sounds like you have been through quite a lot in a very short period! I'm sorry your daughter has had such a rough start. You aren't crazy - some of the symptoms you describe (salty forehead, wrinkling in the bath, floating stools, GERD, congestion) are all consistent with possible...
  9. K

    Switch From Kalydeco to Symdeko

    Ethan, Symdeko has definitely helped with chest tightness for me, and I think it's helped with exercise tolerance as well. I switched from Orkambi about 2 months ago but also had a head start because I was on it last fall during a Vertex triple combo trial for a few months. My lungs are...
  10. K

    Who can explain this mutation? Delta 508f/c.2274_2275delinsT

    Mama K, It does seem like that second mutation is super rare, I also couldn't find it in any databases so I hope that UK CF trust is able to answer you. But I wanted to address the second part of your question - yes, absolutely, there is a future for your children. There has never been a better...
  11. K

    Kalydeco and unwanted weight gain???

    I know how you feel! I've been on Orkambi and tez/iva, so not exactly the same situation, but I too have no need to gain any weight. I just eat it with breakfast and dinner and don't stress too much about it being exactly 12 hours apart. I don't eat an extra meal to take the drug - that might help.
  12. K

    Orkambi effectiveness in terms of corrected protein count?

    Nope it's Vertex! This link has most of the relevant information: as far as how they're doing in patients, and then if you dig around Vertex's site you can find old investor presentations where they show cell data. But the important...
  13. K

    Orkambi effectiveness in terms of corrected protein count?

    We can't quantify it exactly. In cells, it restored about 20-30% of protein function. It's thought that we need at least 30-40% function restored to really see a big difference, so Orkambi is kind of right on the cusp. And what happens in cells isn't necessarily exactly what happens in people -...
  14. K

    Trouble understanding test R117h hetero or homo...

    It's two different mutations. He is heterozygous for R117H, and homozygous for a different mutation - the 7t variant. Both are CFTR mutations, and since he's homozygous for the 7t variant, he could have CF.
  15. K

    terrible adhesive allergy, possible iodine allergy connection?

    LittleLab - Tegaderm can certainly cause a mild rash (and does, for me, within a few hours) but what beccasmama is describing really sounds like a classic chloraprep rash. I've seen many patients talking about it over the years - this is no mild rash. It's oozing, weeping, itchy, burning...