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  • Ketamine therapy

    Posted by Reese on October 26, 2023 at 9:51 pm

    As most know, ketamine is an orphan drug for ALS. I’ve had 6 infusions so far, 1.4 mg/kg over a 2 hour period. Also taking Spravato once a week (the s-isomer, 84 mg via nasal mist). I don’t have a placebo body so I can’t tell if it slowed progression, but I’m definitely less suicidal. It’s an amazing drug, it’s also a bronchodilator so it’s easier to breath when using it. Infusion clinics are everywhere, cost is anywhere from around $400 to $800. Ketamine is cheap, the cost is for the medical staff. I would recommend this treatment for any pALS, what an experience it is. Insurance pays for Spravato for treatment (SSRI) resistant depression. I’m hopeful to get insurance approval for the IV infusions since it’s an orphan drug. Anyone tried ketamine?

    Reese replied 6 months, 4 weeks ago 4 Members · 6 Replies
  • 6 Replies
  • Amanda

    Member
    October 29, 2023 at 11:41 am

    I’ve seen some centers offering Ketamine for ALS, but I haven’t seen any research showing how it directly impacts ALS symptoms themselves. I have a friend who gets infusions regularly to treat severe bipolar and it has changed her life. She experiences a lot less depressive episodes and she swears by it. I can see how it might help someone’s mood. Having ALS is definitely hard on a person’s mental health. The claims I’ve seen on websites read very vague and “ify” as far as actually helping reduce the progression of ALS. Things like, “Could possibly” and “Might” are used often. Personally, I would encourage anyone to talk to their doctor and see if insurance may cover treatments especially addressing mental health. As always, do your own research and know the pros and cons and have realistic expectations!

    Amanda

  • Reese

    Member
    October 30, 2023 at 7:47 pm

    The FDA would not have approved it as orphan drug if there wasn’t solid evidence that it helps ALS. It prevents glutamate binding and coats nerves with protective lipid coating. I can’t argue about the efficacy, I’m not a doctor. ALS News Today has published 2 articles on this.

    • Kim Belden

      Member
      October 31, 2023 at 2:41 pm

      My psychiatrist and also my pain management neurologist believe that it is super effective for depression and, in higher doses, for pain.

      I have a heart arrhythmia but I’m still considering it. I know it has worked wonders for people I know.

      With ALS, I definitely think it’s worth a shot.

  • shell

    Member
    November 2, 2023 at 10:36 am

    There is a website called Joyous where you can order at home low dose daily ketamine. No side effects like the high dose infusions. Do you think this would work as well?

  • Reese

    Member
    November 2, 2023 at 4:06 pm

    My administering doctor is going to call the clinic below and get their protocol. He just gave me the protocol for treating depression, we couldn’t find the protocol for treating ALS.

  • Reese

    Member
    November 2, 2023 at 4:46 pm

    Just found out the protocol at Florida Mind Health for ALS treatment is four 4 hour infusions at a whopping 3 mg/kg/hr. You can’t get that dose via pills, and it will definitely cause hallucinations- which isn’t a bad thing especially when you’re listening to your favorite music. I was obviously under-dosed.

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