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Thread: Post Your Orkambi Updates

  1. #101
    Ok, orkambi day 5. Finally I can breathe again. It has been truly "hell week" as they call it. Aweful chest tightness and sob from 2 hrs after the initial dose. I was using albuterol nebs 4 to 5x a day to get any relief. Hang in there guys, the s/s will dissipate!! My fev 1 was 47% a month ago and i went to clini yesterday to make sure they werent dropping because I felt so terrible. My fev1 actually went up to 49%!!!! Today i feel less sob and less tired, much looser cough and hopeful that this med will get me up in the 50's for the first time in years! Fingers crossed!!!

  2. #102
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    Smiling ear to ear! How wonderful it you can get to 50% or even higher!!! THANK YOU SO much for sharing!!
    Quote Originally Posted by Rossigrl View Post
    Ok, orkambi day 5. Finally I can breathe again. It has been truly "hell week" as they call it. Aweful chest tightness and sob from 2 hrs after the initial dose. I was using albuterol nebs 4 to 5x a day to get any relief. Hang in there guys, the s/s will dissipate!! My fev 1 was 47% a month ago and i went to clini yesterday to make sure they werent dropping because I felt so terrible. My fev1 actually went up to 49%!!!! Today i feel less sob and less tired, much looser cough and hopeful that this med will get me up in the 50's for the first time in years! Fingers crossed!!!

  3. #103
    I'm still trying to stay positive but I've been on Orkambi for two weeks today and it is still just kicking my butt. Fatigue, very light headed, pretty much an every other day bout of the runs and my pulse seems to want to really race whenever I make a move that is even close to out of the ordinary. At this second, I honestly don't know that I could blow out a candle.

    I go in for PFT's next Friday and I've gotta say that I'm not looking forward to it. I was at 31% FEV1 back on Aug. 7 when my "tune up" visit to the Univ of Iowa ended and I really don't think I could come anywhere near that at the moment. About the only positive I have has nothing to do with the Orkambi. I had cracked a rib while in the hospital from coughing so hard and that is finally starting to not hurt so badly.

  4. #104
    Cubs fan Brian. Hang in there dude. For the folks under 40% it seems like its a hard road. I am starting to feel somewhat normal/usual/baseline, on day 17. Still have intermittent fevers, rhinitis, mild GI issues. But the headaches are going away, the SOB is getting bearable and shorter-lived, and yesterday and today I am starting to get back to reasonable energy. Now, I havent really seen any improvement in my lung function so far, but I probably have to get a couple of weeks beyond the initial whammy time. It certainly took beyond 2 weeks for me to starting feeling more normalized.

    PS Glad to hear the cracked rib is better. Every few years I break 2-3 of those suckers from coughing too much and too hard. Have you tried hydrocodone to damp down the coughing so the ribs dont break? You still cough, but when things are really starting to hurt and get close to snapping, it can prevent a break. Least it has many many times in my case.
    ddf508, diagnosed at 3 months, GERD, CFRD, ASD, FEV1 37%, 2 daughters, married 20 years. Tolerated Orkambi for only 5 weeks.

  5. #105
    Quote Originally Posted by imported_Momto2 View Post
    Cubs fan Brian. Hang in there dude. For the folks under 40% it seems like its a hard road. I am starting to feel somewhat normal/usual/baseline, on day 17. Still have intermittent fevers, rhinitis, mild GI issues. But the headaches are going away, the SOB is getting bearable and shorter-lived, and yesterday and today I am starting to get back to reasonable energy. Now, I havent really seen any improvement in my lung function so far, but I probably have to get a couple of weeks beyond the initial whammy time. It certainly took beyond 2 weeks for me to starting feeling more normalized.

    PS Glad to hear the cracked rib is better. Every few years I break 2-3 of those suckers from coughing too much and too hard. Have you tried hydrocodone to damp down the coughing so the ribs dont break? You still cough, but when things are really starting to hurt and get close to snapping, it can prevent a break. Least it has many many times in my case.
    Thanks for the encouragement. It's definitely an odd road this stuff has sent us all down. I wake up in the morning and the first thing I think of is, "Well, what's it going to be that is kicking my butt today?" Well, unless it's obvious that it's going to be the GI issues, then I high tail it for the bathroom.

    Yep, I was on hydrocodone but finished the prescription. I think I'm over the hump now with the rib. Sort of got to where I figured out what kind of movements I could and couldn't make, sneezes are something that I don't think there's an answer for, however. Wow, those puppies hurt!

  6. #106
    Have you tried wrapping your ribs up tightly with a scarf or small blanket when you feel coughing coming on? I found that really helped. Hydrocodone is OK for pain, but great for relaxing the bronchospasms. I keep some on hand at all times in case I get on a "coughing jag".

    Well, lets hear it for less butt-kicking as time goes on and more enjoyment of life!

    toodles
    ddf508, diagnosed at 3 months, GERD, CFRD, ASD, FEV1 37%, 2 daughters, married 20 years. Tolerated Orkambi for only 5 weeks.

  7. #107
    Allansarmy
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    INSURANCE UPDATE:

    I am very pleased to see Vertex (maker of Orkambi) really stepping up to the plate and helping out the best way they can. If you go to www.vertexgps.com, there is a form under 'physicians' print it out and have your CF clinic help you out with it. They will fax it into Vertex. They will call you and walk you through a few things over the phone. Took about 10 min. I had a $100 copay for a specialty pharmacy Rx and they helped lower it down to $15 since I had commercial insurance. Its kinda nice to see a company really help out like this.

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