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Difficulties Finding Progessive MS Treatment

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    Difficulties Finding Progessive MS Treatment

    New drugs haven’t brought about any significant improvement in the treatment of progressive multiple sclerosis. For a variety of reasons.

    Medications currently used to treat multiple sclerosis (MS) can merely reduce relapses during the initial relapsing-remitting phase. Many patients, however, develop progressive MS at a later stage, with disability becoming progressively worse. This type cannot be sufficiently treated at yet. Possible causes why an effective therapy for progressive MS is still lacking have been compiled by an international research team in a review article in the journal “Nature Reviews Drug Discovery” from 9 August 2019.

    https://news.rub.de/english/press-re...erosis-therapy
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    #2
    Yes KoKo. This is the grim reality of having progressive MS. I guess it’s our cross to bear. I’m still hopeful though. I have to tell myself to be. But now maybe for the next generation. Times running out on ours.
    It was one agains't 2.5million toughest one we ever fought.

    Comment


      #3
      Originally posted by oceanpride View Post
      Yes KoKo. This is the grim reality of having progressive MS. I guess it’s our cross to bear. I’m still hopeful though. I have to tell myself to be. But now maybe for the next generation. Times running out on ours.
      Hi oceanpride

      The researchers seem to be focusing on Progressive MS a whole lot more these days, so you never know.

      I remain hopeful too, that the mysteries of MS will be figured out, sometime in the not so distant future.

      Take Care
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        I am not sure what the guidelines are for PPMS and Ocrevus. There was a gentleman on his second round my last Ty infusion. He said doc thought PPMS due to his age at diagnosis, lesion load, and aggressiveness of progression. He is still ambulatory, so trying Ocrevus to hopefully fight it off.

        It does seem to be more studies on progressive MS, whether PPMS or SPMS. I do hope more options are found. Also hope we see some progress on remylenation.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Originally posted by pennstater View Post
          It does seem to be more studies on progressive MS, whether PPMS or SPMS. I do hope more options are found. Also hope we see some progress on remylenation.
          It can't come fast enough for some of us.

          But for the future, I hope new research will be forthcoming for the next generations to come.
          Cynically speaking, I've given up hope for a cure. Been hearing that for years now.
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            Originally posted by pennstater View Post
            He said doc thought PPMS due to his age at diagnosis, lesion load, and aggressiveness of progression. He is still ambulatory, so trying Ocrevus to hopefully fight it off.
            In my opinion (non-professional), I think the article is most likely referring to the progressive phase where MS is driven primarily by neurodegeneration, with no inflammatory activity present on MRI.

            Ocrevus is most effective for active MS, which is driven primarily by inflammation, from what I understand.

            It's the neurodegeneration that is difficult to figure out and treat.

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              Originally posted by KoKo View Post
              In my opinion (non-professional), I think the article is most likely referring to the progressive phase where MS is driven primarily by neurodegeneration, with no inflammatory activity present on MRI.

              Ocrevus is most effective for active MS, which is driven primarily by inflammation, from what I understand.

              It's the neurodegeneration that is difficult to figure out and treat.

              Take Care
              Here is a better explanation:

              Primary progressive MS (PPMS). PPMS is characterized by steadily worsening neurologic function or disability from the onset of symptoms. A diagnosis of PPMS may be further modified at any point in time as active, with new MRI activity and/or relapses, or as not active.

              In addition, both active and not active PPMS may be further modified as with progression, meaning there is objective evidence of sustained worsening over time, or without progression. Active PPMS may still be described as “without progression” if there are new lesions on MRI, but no observable increase in disability.

              Previously, people diagnosed with PPMS were not considered eligible for treatment with a disease-modifying therapy (DMT). However, under the new descriptions, people with active PPMS (those who have new inflammation or a new relapse) may talk with their doctors about possible treatment with a DMT.

              http://www.momentummagazineonline.co...tions-revised/

              I think that most neuros will prescribe Ocrevus for persons with PPMS, even if no inflammation is present on MRI, especially if the progression is aggressive.

              Take Care
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                I was diagnosed with PPMS , 22 years ago😔😔
                My MS has progressed steadily over the years , constantly I have been on one of treatments Avonex, copaxon , Tysabri , tecfidera , ôcrevus .
                I don’t know how would I be if I was not on DMT.

                But I’m very disappointed that since 2 and half years ago that I started being treated with Ocrevus , my MS has been very aggravated and progressed rapidly
                So I have lost hope to seeing effective treatment for PPMS in my lifetime .

                Wish you luck.

                Comment


                  #9
                  Where Lies The Focus ?

                  Saw this thread and it reminded me of a recent conversation I had recently with a family member about MS and the progress of treatments.

                  Is there any focus on actually getting to potential causes of this disease? ( is it a disease?)

                  What causes it ? What country or parts of the globe have the most cases ?

                  I know there is some data / thesis' out there in the interweb that kinda half fast answer the above questions, but where is the monster sized data base that can tie everything together?

                  You know, like keeping everything up to date. Total number of cases per country, cases per age group, total number of cases per sex, demographic similarities, past lifestyles, general eating habits, previous surgeries, hospitalizations, illnesses, vaccines, travels. There are a lot of talented people on this planet, ( a lot of greedy ones too ). I know that such research exist, however much of what we get to see is watered down and doesn't really seem credible sometimes.


                  I woulsd gladly donate time in answering hundreds of questions that might help relate to others that have neurological related issues.I'm sure everyone affected would do the same. Too bad funding cant be allocated towards more cause rather than cure... it just seems backards (to me).

                  Its kinda like fixing an electrical or mechanical problem... ya cant fix it until you know where the problem is...... ya cant really keep the problem from occuring again unless you are able diagnose the starting point, or cause.




                  It just seems a no brainer that before finding a *CURE*..... maybe we focus on finding a cause ! All the hype seems gathered in the area of drugs this and drugs that...phooey !!!!!!!

                  I really hope that I am just ranting with under educated rust belt rage.

                  I hope that such database is already implemented or close to complete. ( seems kinda necessary )




                  Peace

                  Comment


                    #10
                    Yeah I don't hold out much hope for a cure and that is largely because the CNS is so complicated. We haven't really had any medical homeruns in decades as far as I can tell. Young women are still dying from breast cancer for heaven's sake. I think that would be worlds easier to identify and cure than MS but apparently not.

                    I believe it is the complicated nature of this disease not any kind of pharma conspiracy and am hopeful there will continue to be strides when I consider all the medications available for us now. I pray PPMS offerings will catch up to the RRMS medication options.

                    The good news I recently heard from a neurologist was that he has anecdotally seen a marked reduction in significant impairment in the early decades of MS as compared to years ago which he attributes to the medications. I'm trying to brace myself and gracefully accept as I get in my 60s and 70s that regardless of MS or not a reasonable expectation is a gradual decline in function.
                    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


                      #11
                      Originally posted by Jules A View Post
                      Yeah I don't hold out much hope for a cure and that is largely because the CNS is so complicated. We haven't really had any medical homeruns in decades as far as I can tell.
                      Looks like we'll get to see how effective stem cell therapy is for MS, as Selma Blair appears to be very open (publicly) with her treatment and recovery progress.

                      Will stem cell therapy be a 'cure' for MS? Time will tell.

                      Take Care
                      PPMS for 26 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #12
                        Originally posted by KoKo View Post
                        Looks like we'll get to see how effective stem cell therapy is for MS, as Selma Blair appears to be very open (publicly) with her treatment and recovery progress.

                        Will stem cell therapy be a 'cure' for MS? Time will tell.

                        Take Care
                        I lean toward skepticism and believe stem cells will likely be similar to medical cannabis, possibly helpful for some issues but definitely not the magic bullet people are hoping they will be. However I would be very happy to be proven wrong and actually hope that is what happens.

                        Like you said time will tell.
                        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


                          #13
                          Originally posted by Jules A View Post
                          I lean toward skepticism and believe stem cells will likely be similar to medical cannabis, possibly helpful for some issues but definitely not the magic bullet people are hoping they will be. However I would be very happy to be proven wrong and actually hope that is what happens.
                          I think you may be right, Jules.

                          Q. Who might benefit from HSCT?

                          A. So far, published results suggest that people who may benefit from HSCT have
                          highly inflammatory relapsing‐remitting MS, can walk, have had MS for 10 years
                          or less, and have not been helped by available disease‐modifying therapies.
                          “Highly inflammatory” means that there are significant signs of disease activity,
                          made evident by relapses and relatively rapid worsening of symptoms and
                          disability.

                          Q. Does HSCT help people with long‐standing progressive MS?

                          A. Based on published results to date, it does not appear to. The evidence so far
                          suggests that this procedure might benefit a subset of people with very active,
                          relapsing‐remitting MS that is not controlled by available medications.

                          https://www.nationalmssociety.org/Na...About-HSCT.pdf

                          Take Care
                          PPMS for 26 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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