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  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...
  16. K

    terrible adhesive allergy, possible iodine allergy connection?

    beccasmama yes I have been dealing with this for 5-6 years now so I have done a lot of research! Yes, it is very commonly used in surgeries so make sure to always mention it. When I had surgery last year they wanted me to bathe in it the night before.
  17. K

    terrible adhesive allergy, possible iodine allergy connection?

    As others have said, this sounds like a classic chloraprep allergy. Use betadyne and don't use bio patches as others have said but it's because they have chloraprep embedded in them. The only dressing I'm not allergic to is sorbaview - we tried several bandages while I had the blistering rash...
  18. K

    so frustrated...major drop in lung function so fast

    Yes, I was always around 95-100 FEV1 and about 18 months ago tried the new TOBI podhaler for a few weeks and it tanked my lung function down to 75. I've barely recovered from that, I've been sitting at about 80 for over a year now and IVs, other treatments, etc don't seem to help. We did a...
  19. K

    Mystery illness - seeking opinions

    This is the description for POTS: "POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more." and a website as well:
  20. K

    Mystery illness - seeking opinions

    I think CF is worth looking into but I'm not sold that it's definitely the answer either. Have you been tested for POTS? Your issues with getting fatigued showering and your heart rate when standing up sound more like POTS to me - I don't know a ton about it, just have a friend with it. I sent...