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Starting Amylyx!

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    Starting Amylyx!

    Well, I had a very good phone call from a nurse, and my neurologist has arranged for me to start taking Amylyx (called Albrioza here in Canada). The most fantastic news is that the company arranged for the expense of it, so that I do not have to pay anything. It is $250 000 Canadian a year, but I don’t have to pay! It will be delivered to my house each month, with the nurse checking in every week. Some unpleasant side effects (nausea, diarrhea, gas) and it tastes terrible but all worth it if it slows progression. Fingers crossed 🤞🏻

    #2
    That's fantastic news AngieCanuck, so pleased for you. 🤞 for no unpleasant side effects and slowing down progression x

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      #3
      I’m so happy for you, that’s just incredible news. 🙂

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        #4
        AngieCanuck sounds interesting. How long will this be for? Well done you xxx
        when i can think of something profound i will update this.

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          #5
          Oh Angie thats fab news. You could always mix it with a dash of squash. I'm flabbergasted at the price.
          you deserve it xxxx😘
          Diagnosed May 2021 bulbar onset als.

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            #6
            Great news AngieCanuck - just wonderful to hear something positive and helpful happening for you xx
            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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              #7
              AngieCanuck AMX0035 is taken before a snack or a meal, so have it ready to eat because, by all accounts, it tastes vile 😬

              Anecdotally, the tummy issues do usually subside xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                #8
                AngieCanuck that's great news Angie. What a relief that you dont have to pay for it also. I hope the side effects are short lived. Am sure the earlier you start this type of medication the better so its great you have got going with it already. X
                Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                  #9
                  AngieCanuck we are looking forward to your updates and how you are getting on with it.

                  You mention the diarrhea​, it might be something that doesn't come along.

                  Not gettting too personal but I suffered from the tummy issue all my life until I started taking co-codamol. For the first time in my life I found out what it was like to have a normal movement (as they say in polite circles). So you never know. Something else that you are on might stop the belly issues.

                  Fantastic news.

                  Remember chocolate and cup of tea always helps

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                    #10
                    Okay, day 4 of Amylyx. No diarrhea yet. Some nausea, but nothing gravol can’t fix.
                    The taste is absolutely horrid. Can’t take gulps too big, because it triggers my gag reflex. It sort of tastes like grapefruit juice x 10 000, with a hint of aspartame. Really wretched, but visualizing positive things like being able to continue to walk for longer. I’ve discovered that taking a sip, then a bite of very burnt toast. The burnt toast overpowers the bitterness a bit and makes it more palatable.
                    Attached Files

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                      #11
                      And some lovely warm slippers too!

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                        #12
                        Well I think what I am most impressed by is the lack of crumbs on your legs.

                        Oops is that just me admitting how messy I am.

                        Thank you Angie for keeping us updated and for offering your user tips.

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                          #13
                          How exciting Angie, and thanks for giving us updates. Hope you don’t suffer too much and you really get benefits. Xx
                          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                            #14
                            Christopher the crumbs didn’t make it to my legs, but were all over my chest. Looked like I was wearing a burnt crumbs shirt 😂
                            Heather R Fingers crossed 🤞🏻it will keep me walking for longer.

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                              #15
                              AngieCanuck Ah, I know what you mean. I was wearing a purple jumper the other day, might have been indulging in some cake type snacks while watching a film. I looked down and it was though I had just decided to try and feed a flock of sparrows by spreading crumbs all over my jumper.

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