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    I Want a New Drug

    When I was diagnosed with multiple sclerosis (MS) there were basically a small handful of injection medications and one infusion medication. A government cost versus benefit analysis ranked MS drugs as being the costliest medications with the least return value.

    The infusion medication, while effective, had killed a number of patients and had just returned to the market with a black box warning.

    There were no drugs for progressive forms of MS leaving those patients living with the unbridled natural course of the disease.

    Patients were begging for the elusive "cure," without even agreeing on what a cure would be. Would a cure: prevent the disease, stop the progression of damage, and/or repair already accumulated damage.

    A few "cures" like bee sting therapy, Chronic Cerebrospinal Venous Insufficiency (CCSVI), Coimbra Protocol, the Wahl's Protocol, etc.all reared up with varying degrees of success, but none were cures.

    New medications came to market based on rodent embryos, Asian fungus and even a leather preservative.

    The most promising treatment based on stem cell therapy remained walled off in trials for well-curated patients and celebrities. Average patients scraped up tens of thousands of dollars and went overseas for stem cell treatment.

    Other promising treatments attempting to promote remyelination have failed during clinical trials.

    A little over a decade since my diagnosis and we now have over 2 dozen medication options. There are now medications for progressive forms of the disease.

    Some of the newer medications are even putting patients in a state of "No Evidence of Disease Activity " where no disease progression is realized, no relapses and no new lesions are found. To some people this is close to a "cure" by stopping increased damage and further disability.

    Many patients are convinced "Big Pharma" would never let a cure come to market because MS patients are cash cows. Well, hepatitis C was effectively cured, so why not multiple sclerosis?

    There's new hope about not only stopping the disease, but also the possibility of repairing existing damage. Two new medication candidates (ATA188 and NVG-291) are early in the trial phase, but showing remyelination might be possible. New and larger trials are being scheduled ASAP.

    We're still a few years away from knowing the outcome of these compounds, but again there's new hope on the horizon.

    Scientists are mostly convinced the cause of MS IS Epstein-Barr (EBV) virus that causes mononucleosis. With a probable cause new therapies and even a vaccine might be forthcoming.

    Exciting times.



    "I Want a New Drug" was a Huey Lewis song was released in January 1984.

    I want a new drug, one that won't make me sick
    One that won't make me crash my car
    Or make me feel three-feet thick
    I want a new drug, one that won't hurt my head
    One that won't make my mouth too dry
    Or make my eyes too red
    One that won't make me nervous
    Wonderin' what to do


    #2
    Love this Marco. I am hopeful as well. I also am curious to see if mRNA technology yields any new potential avenues to target MS.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      From your fingertips to God’s ears.
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
      Anonymous

      Comment


        #4
        Just wanted to share a YouTube link to the song that Marco referenced:

        https://www.youtube.com/watch?v=_nlMn9A-6LA
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Originally posted by pennstater View Post
          Love this Marco. I am hopeful as well. I also am curious to see if mRNA technology yields any new potential avenues to target MS.
          I love this too, Marco, and have high hopes as well. You have such a talent for writing about all things relating to MS. You should write a book!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            Great stuff Marco. I hope somebody or a team of somebody’s can finally get rid of MS.
            I’ve tried just about all of the above and will keep trying till something works…
            Things can’t happen fast enough.
            Meanwhile, we’ll just have get by , one day at a time.
            You all have my gratitude for staying on top of things.
            It was one agains't 2.5million toughest one we ever fought.

            Comment


              #7
              That is super exciting. When I was first diagnosed they were talking about remyelenation in rats. That seemed light years away from reaching us.

              To see the ability to reverse demyelination in my lifetime is a dream come true.

              Comment


                #8

                You remain without acrimony after years of keeping abreast of research papers, studies and pharmaceutical bureaucracy that comes with it. And you pass on the positive continuously.

                It just may be exciting times!

                Sincere thanks Marco. My cynicism needed a kick in the teeth.




                Comment


                  #9
                  I don't want any more drugs. I'm tired of meds.

                  Although I'm grateful that the research is being done and would love for a cure to be found, I am not hopeful.

                  I explore healthful natural ways to halt and reverse my MS progression. I hope to find successful strategies. Diet, supplements, exercise, removal of toxins, stress management, etc.
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment

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