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    • #21113

      Hi All

      Hope you all feeling great today!

      I have been reading a lot about causes / possible mechanisms / possible treatments for ALS.  Among other possible causes (inflammation / toxicity / genetic / gut microbiome / protein folding / mitochondrial etc ) one of the possible one is response of immune system to the antibodies, T cells, chemokines and cytokines and other markers of inflammation, and related to systemic immune activation. Reduced regulatory T cells (Treg) correlate with the rate of disease progression (and there is already a clinical trial related to Treg therapy).  Normal immune response is helpful but in case of this disease it is harmful and it continues to degenerate neurons.

      Here is my thought: is there any chance of using immunosuppressant drugs which would shut down the immune system and hence immune response so as to prevent degeneration of neurons? has anyone done any experiment? can such a drug be used under some doctor’s observation?

      Appreciate your thoughts,




    • #21119

      > immunosuppressant drugs … under some doctor’s observation

      Immunology is thought as one of the most complex domains in medicine.

      Few specialists/scientists pretend to understand it in the healthy human, so I guess it’s above the head of the average practitioner to apply its knowledge of immunity to ALS.

    • #21131
      Laurel Linton

      I would be very interested in learning more about this topic!

    • #21136
      Andrew UK

      I could be wrong but I thought that the mechanism that Ibubilast ( I imported it from Japan) works on is a down regulation of certain forms of the immune system. Some supplements may also help such as Curcumin, quercetin and some of the mushrooms such as baicalin and lions mane. As ever caution as I have read somewhere that too much baicalin can be toxic and Lions mane may promote/up regulate SOD1 which may be of dubious benefit to a SOD1 mutant such as myself

      • #21504

        totally agree

    • #21139

      Hi Andrew,

      Thank you so much for sharing the information about Ibudilast, this is exactly the same idea that I mentioned above. Here is a link which describes the trial related to this drug

      MN-166 (Ibudilast)

      This drug works to modulate/control the immune system for either genetic / sporadic pALS.  It plays important role in inflammation by blocking the activity of cell signaling molecules. In case of pALS, the immune system continues to react to the inflammation, the cause of inflammation is identified as the motor neurons and hence it keeps killing them. But when this closed loop is broken or tuned down by using such blockers, it will promote the survival / development / function of nerve cells.

      The above link shows a great outcome!  And further I also found that in US, there is a trial related to this drug –> NCT04057898 – here is the link

      And this is recruiting now!  I will definitely try to contact.

      Andrew, I have couple of questions for you: 1. How long have you been taking the drug Ibudilast? 2. How do you feel your response to this drug?

      Further, the natural turmeric (yellow color spice) also works on the same lines to control immune system and reduce nerve inflammation. Here is how I take turmeric – take 1 spoon of ghee (cleared butter), add 1 spoon of turmeric (powder form), add some black pepper, heat up and mix well, eat this mix twice a day (there is not much taste, you can add 1 spoon honey to this if you like). Mixing with ghee (fat) and black pepper helps in easy absorption.  I am also taking Theracurmin – as suggested by Dr Bedlack.

      Best regards!


      • #21146


        I think I would better order Ibudilast from Japan rather than to be on trial, since on trial there will be 50/50 chances to be either on drug or placebo.

        , Thank you so much for your inputs!

        Wishing all the best to you all!

        • #21150
          Jim Conner

          What you paying for the lbudilast and did your doctor advise you one the drug?

        • #21152

          Hi Jim

          Actually there is a clinical trial (recruiting now) which I mentioned earlier. So my doctor says I should go for that. But I am thinking to buy on my own, and for my doctor to prescribe this drug, I need to wait a few weeks due to holidays. One of the Japan pharmacy may not need prescription –> The price $88 for 10mg 100 tablets + shipping. But they also offer some discounts.  I am working on ordering around 500.

          Best regards!

    • #21162
      Lisa Brown

      Has anybody thought of Chemotherapy?

    • #21163

      > Has anybody thought of Chemotherapy?
      This is the thread of people playing with fire? 😉

      It seems to me that the challenge in ALS is to keep nerves cells (CNS + PNS) alive as long as possible.

      Chemotherapy has a strong effect on cells like astrocytes (it kills them) without which neurons die. This has even a name “the chemofog”. Look at Wikipedia, there is detailed article on it. It looks to me it’s the last thing an ALS patient would need.

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