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  • The next Step

    Posted by Amanda on May 22, 2023 at 7:07 am

    Thursday afternoon I received a text from the U of Miami team asking if I could be there on Friday. I responded, “Absolutely” and went home and packed an overnight bag. A little of the back story .. I have been participating in the Pre-fALS study since 2010ish. On December 2nd, they confirmed I had SOD1 ALS. At that time they expected QALSody to be approved in January; however, the FDA had postponed the review date until April 25th. The first week of April the team applied for Compassionate Care access to Tofersen/QALSody. I was expecting that to take a month or so…..That wasn’t the case. There were so many hoops and it was an emotional roller coaster. Still is! On April 11th Biogen put all applications on hold until after the FDA made a decision. Once it was approved I thought, “Great, a week or two!” Not the case. Now the medical team is having to attempt to get it approved through insurance and I was called to Miami to have additional testing because the can’t share the information from research with the insurance company. (I’m really making a long story short if you can believe it.) Saturday I received a text from one of the doctors and she said that they are hoping to start the dosing in the next week or two. I got super excited, but I had to remind myself that although they are working hard to get me on treatments, there is still the issue of my insurance. Meanwhile, last Friday at my clinic visit I saw a neurologist (he was amazing!!), social worker, ALS Association rep, nutritionist, physical therapist, respiratory therapist, occupational therapist, and psychologist (that was fun since I’m a school psychologist! We could have talked for hours. I also did some testing with the pre-fALS team after my appointment. As it stands now I hope to start the dosing of QALSody in the next two weeks. The neurologist did prescribe Riluzole too. I’m praying that QALSody is as beneficial as the team thinks it will be. If it is, it is definitely a big game changer for SOD1 pALS. And, hopefully the other mutations will have treatments very soon!

    Any advice or information on starting Riluzole? What have your side effects been? Do you think it is helping and how?

    Any advice for navigating the next few months of appointments?
    Amanda

    Dagmar replied 1 year ago 2 Members · 1 Reply
  • 1 Reply
  • Dagmar

    Member
    May 23, 2023 at 12:15 pm

    Congratulations on jumping through all the hoops to be able to take Tofersen! And, your recent interview was fabulous!

    https://winknews.com/2023/05/22/cape-coral-woman-with-genetic-als-to-test-newly-approved-drug/

    I’ve been taking Riluzole for 13 yrs now and here are my thoughts: taking it during or immediately following a meal gives me indigestion. I take my AM pill with a sip of fruit juice, then wait a few minutes before my breakfast – – which is a fruit smoothie – – so I guess those “play well.” The instructions say to avoid consuming fats when you take it – – so at dinner, I swallow the pill with a sip of my ice tea, then try to eat the vegetables first, then my protein and fat… haven’t had any problems yet! Hope this is helpful.

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