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Thread: Anyone had to wean themselves off of Orkambi?

  1. #1

    Anyone had to wean themselves off of Orkambi?

    A person at Vertex in the GPS program just royally dropped the ball with some financial stuff and I will be running out of Orkambi in 2 weeks time. Do any of you have any experience with or have themselves had to wean off of Orkambi and if so, how did you do it? Is it a necessary/preferred thing to do or can I just stop cold turkey? Gradual reduction in dosage? Thanks.

  2. #2
    Senior Member
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    Call your CD Doctor
    Male 77 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5T. 100% PI. MAC, CFRD.

  3. #3
    Senior Member
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    Sep 2009
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    Sorry Call your CF Doctor
    Male 77 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5T. 100% PI. MAC, CFRD.

  4. #4
    Quote Originally Posted by Printer View Post
    Sorry Call your CF Doctor
    So, do you have any experience with this process?

  5. #5
    Super Moderator
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    comorgan,

    I’m not a doctor and I don’t have any experience with Orkambi, but I was forced to suddenly stop taking Kalydeco.

    This past year I had to suddenly stop taking it for five days following emergency surgery. I had been taking it for over three years, and it was a life changer.

    After being off it for two days, my mucus became very thick and quite difficult to cough up, as it had been before I began taking Kalydeco in 2014. After about five days, my CFdoctors were able to have me resume taking it with Ensure and within two days my mucus became thin again.

    Six months later I needed a second surgery. This time, while I didn’t miss any doses of Kalydeco, I had to take it with only water for about five days. I got the impression that by taking it without any fat, the Kalydeco had almost no affect. Again my mucus got very thick and my cough returned.After being able to resume takingit again with some fat for about two days (Ensure again) the Kalydeco began obviously working.

    As an aside, when I began taking in 2014 Kalydeco off-label, I was concerned that at some point my insurance provider might deny coverage. To build up some back log, I tried skipping occasional doses. My experiences indicated that missing a dose or two had no no ticeable affect. In fact I’m convinced that for me, Kalydeco might be just as effective if I took doses 18, or even 24 hours apart.

    So, while I’m not a doctor, I think that by stopping Orkambi suddenly, you will just revert to the situation you had before you began taking it.If you really expect to run out of it for a short period of time, you may want to consider stretching the supply you have, by either skipping, or increasing the time between doses.

    Good luck!
    Last edited by stephen; 02-12-2018 at 03:45 PM.
    76 Y/O with CF (D1152H and G542X) and Broncheiectesis.
    FEV1 Low 40s%.
    Started Kalydeco March 2014, Switched to Symdeko March 2018 - and doing very well.

  6. #6

    Red face

    Quote Originally Posted by stephen View Post
    comorgan,

    Iím not a doctor and I donít have any experience with Orkambi, but I was forced to suddenly stop taking Kalydeco.

    This past year I had to suddenly stop taking it for five days following emergency surgery. I had been taking it for over three years, and it was a life changer.

    After being off it for two days, my mucus became very thick and quite difficult to cough up, as it had been before I began taking Kalydeco in 2014. After about five days, my CFdoctors were able to have me resume taking it with Ensure and within two days my mucus became thin again.

    Six months later I needed a second surgery. This time, while I didnít miss any doses of Kalydeco, I had to take it with only water for about five days. I got the impression that by taking it without any fat, the Kalydeco had almost no affect. Again my mucus got very thick and my cough returned.After being able to resume takingit again with some fat for about two days (Ensure again) the Kalydeco began obviously working.

    As an aside, when I began taking in 2014 Kalydeco off-label, I was concerned that at some point my insurance provider might deny coverage. To build up some back log, I tried skipping occasional doses. My experiences indicated that missing a dose or two had no no ticeable affect. In fact Iím convinced that for me, Kalydeco might be just as effective if I took doses 18, or even 24 hours apart.

    So, while Iím not a doctor, I think that by stopping Orkambi suddenly, you will just revert to the situation you had before you began taking it.If you really expect to run out of it for a short period of time, you may want to consider stretching the supply you have, by either skipping, or increasing the time between doses.

    Good luck!

    THAT is exactly what I was looking for. A CFer who has had to step away from these drugs and what the "come down", if any, is like. I really appreciate your posting this. Thanks for taking the time.

  7. #7
    Super Moderator
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    DS had been on Orkambi for a little over a year, was a breeze signing up for it with Vertex GPS assistance, we were even thrilled to find that we could get 3 months supply at a time and then right before the new year, I submitted a refill request and......!!!

    We had an issue with our insurance labeling Orkambi as a specialty drug requiring Prior Approval, so when I went to refill it, with just two weeks left we were told by insurance that we and our clinic had to submit Prior Approval paperwork. So I spent about 4-6 weeks on the phone daily checking on the process, being told my clinic never submitted the property paperwork, that they submitted the wrong paperwork, that appeals took time and to be patient -- basically giving me the run around in the hopes I'd give up. Fortunately, someone at the insurance company issued a one time emergency refill for a month supply. Vertex GPS tried to help, but they were getting conflicting stories as well from insurance in terms of what types of paperwork was required.

    Finally with just a couple days left, I finally got a response, the script was filled albeit only one month at a time allowed and DS missed one dose.

    So while we didn't miss many doses, we still had a major fight on our hand to get to that point. Supposedly we were given 5 years of Prior Approval status; however, I check the insurance company formulary lists monthly to see what they may or may not approve or place on specialty status. So my advice is to keep after them, call daily, take notes of days and times and who you spoke with and their phone numbers. Also ask them to send you exactly what they've sent your clinic. In our case they kept claiming the wrong forms were faxed back or not sent back at all, but I got copies for correspondence from the insurance company with our clinic. Good luck!
    Parent to a child wcf double delta f508

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