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Thread: For people taking Orkambi

  1. #101
    Senior Member
    Join Date
    Jun 2011
    aboveallislove, according to my doc, its my immune system causing most of the issues. Usually I take a chemo drug to suppress my immune system, since it has fun attacking my lungs and causing bronchospasm. (I cant take the chemo and Orkambi) The past couple of years, I've had a heck of a time taking a lot of inhaled meds, including iso and mild hypertonic saline. My lungs have just HAD ENOUGH (picture a toddler crossing their arms over their chest, stamping their foot, and shaking their head). I was really really hoping that a pill, instead of a nebulizer, would bypass some of the issue. But it was not to be. On the good side, I rarely get sick And the super-hydrating effect that the Orkambi seems to have on my lungs and sinuses I can replicate w/o drugs via vagal nerve hyperstimulation. But it only lasts about 10 minutes, thank heaven. Its enough to really help though. THat's how I've lasted so long without out being able to do regular nebulizers.
    ddf508, diagnosed at 3 months, GERD, CFRD, ASD, FEV1 37%, 2 daughters, married 20 years. Tolerated Orkambi for only 5 weeks.

  2. #102
    Senior Member
    Join Date
    May 2007
    Quote Originally Posted by imported_Momto2 View Post
    And the super-hydrating effect that the Orkambi seems to have on my lungs and sinuses
    Hi! Would you mind elaborating on that? How exactly does it help you hydration-wise?

    My biggest gripe about my situation right now is chronic dehydration. I've discovered (through my own research, no thanks to doctors) that I'm dehydrated a lot. A LOT! As well as have electrolyte imbalance (which, not surprisingly, salt is the main one i lose) And the work it takes for me to stay hydrated/ correctly electrolyted, especially during the summer, is insane, and does not even fully work. I've gotten to where in the summer I hardly drink anything other than water and Gatorade. More often than not, that Gatorade has extra salt added to it. Yet, if I slip up, and the balance of Gatorade/water and other stuff (coffee, tea, a soda rarely, twice a week maybe) is off for even one day, I feel effects for days. It's miserable. It can affect my airway clearance too. If I have a headache (which for me are only caused by dehydration/electrolytes and sinus pressure) then I won't do my vest, because it will intensify the pain.

    My digestion issues are manageable. My FEV1 hovers in the mid-upper 70's, which I'm OK with. I should be starting Orkambi next month, and if it does absolutely nothing for my lungs, or my digestion, I'll be just fine with that. I really want to see some improvement in my hydration and electrolytes, and tolerance of warm/hot weather.

  3. #103
    Senior Member
    Join Date
    Jun 2011
    Dj this is not body hydration, its lung mucus hydration. If I drink about 12 ounces of super-cool or very very hot liquid in small sips through a straw and get it to the back of my throat and do this for a period of about 5-10 minutes, it causes a huge rush of liquid into my lungs and sinuses. Literally, my nose runs like a faucet and I can feel the same happening in my lungs. It helps if my body is either very hot or very cold (probably more temperature contrast?) The effect is short-lived though, only lasts for about 10 minutes, but during that time, I can cough a huge amount of crap up and out. I looked it up, apparently I am overstimulating the vagus nerve. Its sort of like gustatory rhinitis, but at least for me, it also causes my lungs to get very very wet. Then the mucous is super easy to cough up. The only other thing that I have ever found that duplicates this was taking the Orkambi the first two times. Unfortunately, the tightness that the orkambi caused, completely mitigated the "wet" respsonse. Either that, or my body acclimated, I dont know.
    ddf508, diagnosed at 3 months, GERD, CFRD, ASD, FEV1 37%, 2 daughters, married 20 years. Tolerated Orkambi for only 5 weeks.

  4. #104
    Just started. Was hoping for the immediate effects 661 had - where my lungs opened up and every cough was a productive one.

    Instead, my lungs have seized shut, and every cough is dry and unproductive. My mucus is much more watery though.

    Hopefully my lungs adjust and the inflammation dies down. Also not digging this fatigue.

    I don't remember any side effects for the 661, hopefully that gets to market soon, because as of right now, Orkambi seems like a bust. :/

  5. #105
    Quote Originally Posted by jamest View Post
    every cough is dry and unproductive. My mucus is much more watery though.
    What mucus is more watery? You said you can't cough it out...are you generalizing and there are some fluke coughs that bring stuff up? Or are they trapped down there and you can feel it sloshing, or feel less dry, etc.?

    Just talked to the pharmacy a couple hours ago and it's shipping today to arrive tomorrow and I'll start fresh Saturday morning and report back...

  6. #106
    Quote Originally Posted by saintoffeon View Post
    What mucus is more watery? You said you can't cough it out...are you generalizing and there are some fluke coughs that bring stuff up? Or are they trapped down there and you can feel it sloshing, or feel less dry, etc.?
    The mucus I cough up. It is a lot like after using pulmozyme, except all the time. In a counter intuitive way, I find it more difficult to get this kind of mucus up. I am also on IV abx, so my lungs probably aren't making a lot anyway.

    The studies suggest that after 6 days, most side effects are gone. Here's hoping for tomorrow.

  7. #107
    Junior Member
    Join Date
    Nov 2004
    This is my experience with Orkambi
    7/30/15 FEV1 in clinic 37%
    7/31/15 Started Orkambi
    8/2/15 Symtoms started
    8/15/15 Hospitalized, FEV1 in hospital 23%, taken off Orkambi
    8/31/15, Discharged from hospital, FEV1 33%, restarted Orkambi
    9/3/15 Symptoms started
    9/17/15 Follow up hospital visit, FEV1 24%, Stopped Orkambi for good
    9/19/15 75% of symptoms already gone. Still have major congestion but can cough it out

    I have to go back into the hospital on Monday for 2 weeks.

  8. #108
    Super Moderator
    Join Date
    Jan 2009
    I suspect I'm prone to oversimplification, but am I off the mark for suggesting that the lower your lung function, the more likely Orkambi will not be helpful and potentially hurtful? It has been said in this thread that the side effects after starting are more severe in lower functions, bit in what percentage does it ultimately help - decrease exacerbations, maintain or improve function, etc. Does someone else see a different or more specific pattern here? Or aware of any research that points to a different explanation?

  9. #109
    Super Moderator
    Join Date
    Mar 2012
    A few thoughts: Vertex is doing a study on Orcambi for those <40% so that will be helpful to understand. It does seem that those with lower lung function have a rougher "start up" than those with higher. But it also seems there are some who just can't tolerate the drug even for those above the 40% lung (as the small % of those who were in the Phase 3 who dropped out). I wonder how many of those have immune response issues, as ImportedMom or if there is any other predictor that showed who dropped out because of the issues. It seems that those who have a "start up" issue would know within 3 weeks because things then improve, whereas for those who don't then it is an issue with the drug. I guess there are always those who react negatively to the meds unfortunately. I wonder if 661 will be different for those???

  10. #110
    Started Saturday morning. 31, male, six feet, 150 lbs. No other major health problems to have any notable influence outside of bronchiectasis. Had a single partial spontaneous lung collapse in 2007 and an embolism almost two years later.

    First dose took about two hours to get to some nasal drainage, then chest tightness (I normally don't even deal with that too much but wow there's no better word for it). Kind of like light pneumonia congestion feeling minus accompanying B.S. from infection.

    Three separate times I got so fatigued it was like someone took my batteries out even in the middle of the day. I didn't even feel tired and didn't feel rested it even comfortable afterwards, just took me out of commission.

    Coughed up some watery things. Very light, so presumably easy access unless it's that devoid of bugs right now.

    Decreased appetite but less like you don't feel like eating and more like it's hard to find the will. No problems once starting. Number two in the bathroom is refreshingly regular but not sure if it's too early to credit the pill.

    Squished breathing made end of day sleep a bit of an effort but once asleep not super disruptive.

    Second day, sometimes not as much tightness, other times much worse. There were pockets where I had to stop and squat or walk slower just to regain myself and my heart was working a little overtime. Nasal drainage isn't constant but seems consistent after each dose. An early visit than nothing till next time.

    Some sinus pressure headaches and warm feeling but for me personally no fevers or chills yet.

    I don't have a means of measuring fev every day but I almost wouldn't bother until the chest clog feeling goes away. Very minor popping pains in chest and stomach. Not many thankfully. It really does feel like someone's sitting on you.

    I have tried except for the resting to be as active as possible and I think it's helping. I know it's a luxury not everyone has but I'm currently unable to do even basic stuff normal sick me could do with relative ease just a couple of days ago.

    That said I could feel myself hit the walls and used sheer will to try to push past. I don't have all my normal drugs yet, just pulmozyme and my vest, so concentrating on clearing things out.

    Coughed up thicker darker and more colorful stuff day two, almost like it's going in order. No massive crazy gangly things yet but better out than in!

    Also limb pain from inflammation and oxidative stress dying down already a bit. Noticeably. Not sure if great coincidence but it's a purer feeling than I can remember experiencing making me feel like the chest is the real focus.

    Mornings were breakfast then half avocado then pills then avocado. Evenings were Babybel individual small cheese rounds half and half followed by mixed nuts (including macadamia).

    Just when I think the fog is lifting I'm reminded how early it is by some extra angry bronchospasm, but it still seems like I've got one of the smoother rides reported so far. Fingers crossed.

    And please do stay as active as possible. Even if you're sitting and flailing your arms because it's all you can do. I truly believe it'll help dig out of this initial week or so cycle of crap while the levels in the blood get to the the appropriate spots.

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