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    #16
    Myoak, thank you for writing this about Ocrevus and your wifes experience. I do believe too that It’s all the same except for the way the inflammatory part works in different people.
    I have been very interested in this as I’m labeled PPMS and for me it’s just a slow and steady decline and there have been absolutely no treatments of any kind till this. I only see a doctor once a year as there’s really no point. My appointment was in February and I went to it. They called last week and spoke to my wife and said Ocrevus was finally approved here for PPMS but the cut off age was 55.
    I’m going to be 59 in August
    I don’t know what the protocol is for other places.
    Maybe they could just give me a seniors dose LOL. Or maybe my lucks run out. Anyway thanks again.
    It was one agains't 2.5million toughest one we ever fought.

    Comment


      #17
      [QUOTE=oceanpride;1507879]Myoak, thank you for writing this about Ocrevus and your wifes experience. I do believe too that It’s all the same except for the way the inflammatory part works in different people.

      Not sure why that sometimes I can't reply to a thread on this site without quoting the previous post. My computer probably has a virus, or something. But in this case I wanted to express a few things to you, oceanpride, so the quote is just fine.

      First, it is awful that Canada would cut off treatment possibilities for you at age 55! Disgusting!

      Second, you are so right about wanting treatment. There is a big debate going on about treating those with so-called "progressive" forms of MS. As most of us are aware, MS is typically progresses at all stages. IMO, it is all one disease.

      Is it important to maintain arm function in progressive MS? YES, CRITICALLY IMPORTANT!!!!


      Then why hasn't that been a treatment goal? An MSer may have SPMS or PPMS, but if so, isn't it even more important to maintain arm function? Why no trials or DMTs for that?

      Tysabri was trialed in SPMS but didn't meet the sought after end points and was not approved for SPMS. But, it did demonstrate benefit in preservation of upper limb function!!! Unfortunately, that preservation was not one of the end points they were looking for so the trial was characterized as a failure in SPMS.

      Preservation of arm function in progressive forms of MS is something which will be much discussed in the future because it is so important.

      And, anything that may help in that area will be investigated.

      I would urge everyone to check out Bart's MS blog for relevant articles on this topic. http://multiple-sclerosis-research.blogspot.com/

      My treatment preferences and prejudices are based on math, probability, and statistics from real world trials. Each person is unique and reacts individually to any particular DMT; that is a given. However, if one med has a reduction of 95% in enhancing lesions and another has 40% reduction, it is important to know that. And, it is important to know these are figures from scientific, real world trials with MSers taking those DMTs.

      Mamabug, I wish you the very best in whatever treatments you take. I'm glad copaxone has worked well for you. According to copaxone trials done prior to its approval copaxone does very little for the majority on it. A benefit for 7 out of a hundred is better than zero out of a hundred. But the other 93 may be better served by something more effective, statistically speaking. IMO, copaxone got approved because there was nothing better at the time. Would it get approved today being no more effective than it is? IMO, probably not. It is debatable but I have no interest in doing so.

      I truly wish you the best, Mamabug and want us to support each other in friendship. Differing opinions doesn't mean we cannot be friends. I like you very much!

      Oh, Mr. Oceanpride you may find this interesting...

      Interferon β-1b for the treatment of primary progressive multiple sclerosis: five-year clinical trial follow-up.
      http://www.ncbi.nlm.nih.gov/pubmed/22084124

      "CONCLUSIONS:
      Modest but beneficial effects of interferon beta-1b on clinical variables and brain atrophy development were observed 5 years after trial termination. Moreover, in-trial lesion activity correlated with EDSS progression after trial termination. Therefore, we provide evidence to consider immunomodulation as a sensible approach to treat primary progressive multiple sclerosis."

      Comment


        #18
        Originally posted by oceanpride View Post
        Myoak, thank you for writing this about Ocrevus and your wifes experience. I do believe too that It’s all the same except for the way the inflammatory part works in different people.
        I have been very interested in this as I’m labeled PPMS and for me it’s just a slow and steady decline and there have been absolutely no treatments of any kind till this. I only see a doctor once a year as there’s really no point. My appointment was in February and I went to it. They called last week and spoke to my wife and said Ocrevus was finally approved here for PPMS but the cut off age was 55.
        I’m going to be 59 in August
        I don’t know what the protocol is for other places.
        Maybe they could just give me a seniors dose LOL. Or maybe my lucks run out. Anyway thanks again.
        When the Ocrevus clinical trial results were analyzed further, the researchers found that the responders to Ocrevus were younger, had shorter disease duration, and had inflammatory activity on MRI.

        Canada and the European Medical Agency use this analysis for their prescribing indications.

        Canada:

        OCREVUS™ is indicated for the management of adult patients with early primary progressive multiple sclerosis (PPMS) as defined by disease duration and level of disability, in conjunction with imaging features characteristic of inflammatory activity.

        http://www.rochecanada.com/content/d...PMS_PM_CIE.pdf

        Europe:

        The EMA is recommending that for PPMS, ocrelizumab should only be prescribed for people with early PPMS, according to the duration of their MS symptoms, their level of disability and whether their MRI results indicate inflammatory activity. The EMA notes that more investigation is required before this treatment can be recommended for people in more advanced stages of disability.

        https://www.msif.org/news/2017/11/16...uropean-union/

        From the Cleveland Clinic Mellen Center on Ocrevus:

        Subgroup analyses of patients in ORATORIO with (n=193) vs without gadolinium-enhancing lesions (n=533) at baseline showed that efficacy tended to be stronger in patients with baseline gad enhancement (HR for disability progression 0.65, 95% CI 0.40, 1.06) than without gad enhancement (HR 0.84, 95% CI 0.62, 1.13).

        This result is consistent with the results of other disease modifying therapies tested in PPMS, the common theme of which is that younger patients and those with evidence of active inflammation in the form of new T2 or gadolinium-enhancing lesions are the most likely to benefit from therapy.


        https://my.clevelandclinic.org/-/sca...mab.ashx?la=en

        There doesn't seem to be an effective treatment, yet, for purely progressive MS.

        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


          #19
          Thanks KoKo. That’s some very good information. I was hopping some one would chime in. I’m very grateful to you. When Myoak said about helping balance well ... I sure could use some help in that department. Oh well back to the drawing board. Thanks again.
          It was one agains't 2.5million toughest one we ever fought.

          Comment


            #20
            Originally posted by oceanpride View Post
            Thanks KoKo. That’s some very good information. I was hopping some one would chime in. I’m very grateful to you. When Myoak said about helping balance well ... I sure could use some help in that department. Oh well back to the drawing board. Thanks again.
            oceanpride

            My walking endurance, and to some extent my balance, has improved somewhat over the past few months.

            I am not on any DMT's.

            I have been working hard on taking steps with my rollator on a very consistent basis, and now have the stamina for walking for 30 min (in my apartment, on level floor). It's slow, and not very graceful - but I'm thankful for the ability to walk at all.

            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


              #21
              Originally posted by Myoak View Post


              Mamabug, I wish you the very best in whatever treatments you take. I'm glad copaxone has worked well for you...

              I truly wish you the best, Mamabug and want us to support each other in friendship. Differing opinions doesn't mean we cannot be friends...
              Thanks! :-)
              ~ 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


                #22
                Originally posted by KoKo View Post
                oceanpride

                My walking endurance, and to some extent my balance, has improved somewhat over the past few months.

                I am not on any DMT's.

                I have been working hard on taking steps with my rollator on a very consistent basis, and now have the stamina for walking for 30 min (in my apartment, on level floor). It's slow, and not very graceful - but I'm thankful for the ability to walk at all.

                Take Care
                That is encouraging news also KOKO. Thank you for that. I guess we’ll always have MS till the day we go but it would be nice if the progression part could run its coarse. Sure would make things easier. I seem to be not doing too bad all things considered. Just keep pushing. Thanks and all the best.
                It was one agains't 2.5million toughest one we ever fought.

                Comment


                  #23
                  Myoak.
                  Thank you for that info. I’m sorry but I missed that post till now. I failed the peg test with my left hand miserably on my last Dr. appointment. They just had to stop it. It was noticeably worse than a year ago. I’m really not doing all that bad though and would like to make sure I don’t get any worse. I think I would take that infusion if I could get it. Maybe when they know a little more about it they might up the age limit a bit but I’ll be that much older. I’m afraid times running out and I’m on my own,same as I’ve been since they diagnosed me and sent me home saying there’s nothing they can do for me 14 years ago. Thanks again.
                  It was one agains't 2.5million toughest one we ever fought.

                  Comment


                    #24
                    Originally posted by oceanpride View Post
                    Myoak.
                    Thank you for that info. I’m sorry but I missed that post till now. I failed the peg test with my left hand miserably on my last Dr. appointment. They just had to stop it. It was noticeably worse than a year ago. I’m really not doing all that bad though and would like to make sure I don’t get any worse...
                    Oceanpride,

                    You are so welcome. It is important to note that Ocrevus is approved for PPMS because it proved beneficial in PPMS.

                    True, improvement "tends" to be in those with active inflammation; that is, in those having gad enhancing lesions and those tended to be younger, or earlier in PPMS rather than later. It is a question of inflammation; not a question of age!

                    One of the things the PPMS study with interferon showed 5 years after the trial ended was that due to therapeutic lag, not all benefits show up in the study period (often a period of two years). But can appear years later, even with modestly beneficial drugs like interferon.

                    Anyone having PPMS with gad enhancing lesions (which is evidence of active demyelination), regardless if they are younger or older, will benefit from meds which reduce those lesions, no matter how old you are. It would be a huge misunderstanding of Ocrevus data to believe otherwise.

                    Let's be abundantly clear... it is the inflammation, the deterioration demonstrated by gad enhancing lesions that MOST benefits from Ocrevus. Inflammation is more frequently seen in younger PwMS but please, no one should do not make the mistake of believing Ocrevus doesn't work as well because of age. Again, Ocrevus works on inflammation, regardless of age. Older PwMS tend to have less inflammation, so of course, more benefit would be seen in younger PwMS who have more inflammation.

                    For those in wheelchairs maintaining upper limb function is critically important, even though arm function is seldom, if ever, a primary end-point in trials. Hopefully, that will someday change, and will if it is ever deemed profitable by pharma.

                    To me, logic says that since Tysabri has demonstrated a benefit in preserving arm function it would be beneficial for many with progressive MS. Now before anyone complains that it was tested and failed in progressive MS, let's make sure everyone understands the study DID NOT have upper limb function as a primary end-point! But, as laymen, if we believe arm function is important, we can say that the trial was successful based on upper limb function, allowing for naysayers who see only dirt and not the gold in it.

                    Ocrevus is as effective as Tysabri in RRMS. Will Ocrevus preserve arm function? Wouldn't it be nice if they would study that aspect in present meds to know for certain? Perhaps, someday they will. But until then we will have to continue using logic and our best guesses to formulate our way forward.

                    Ocean, have you looked at LDN as a possibility? My wife has taken LDN for several years and we believe it is beneficial. I have listened to some very good doctors lecture about their use of LDN to tamp down pro-inflammatory cytokines with very good effect in some patients.

                    Some MSers live rural or backward areas and can't find a prescriber but thankfully naltrexone is easy to buy and it is very easy to make LDN, if need be.

                    Best Wishes!

                    Comment


                      #25
                      . . .I wish I was married to myoak.

                      Comment


                        #26
                        Dyin Myelin, you have a delightful sense of humor! Thank you for the most sublime compliment, how very kind of you.

                        But now to get serious… Do I understand correctly that you were on Tysabri but wanted to become pregnant so you stopped that DMT and went on Tecfidera? If you are still trying to have children I wish you all the success in the world! The biggest mistake of my life was not having children. The feeling I didn’t persist ardently enough haunts me. As you know, there is a time in a woman’s life when children are possible but when that window closes, it is simply too late.

                        If you want children then try while you can; you have to make it happen. It isn’t going to happen on its own. If you don’t make it happen, it probably won’t.

                        You may have seen a study posted in the Tysabri forum under the title, 355 Tysabri Pregnancies. I posted that for you specifically but for anyone else interested, also. Of course, the point being Tysabri pregnancies are not terribly different from those in the general population. I care less about what the prescribing label says than real world experience and that study shows us what the real world experience with Tysabri pregnancies has been.

                        I have no idea how you are doing with Tecfidera but I suspect nowhere near as well as with Tysabri. Treatment choices are so complex. But if I may give a heads up… whatever you do with Tecfidera DO NOT break it apart giving it any chance to get airborne and into your respiratory system. Dimethyl Fumarate was banned in Europe as an anti-fungal leather preservative because a few people got deathly ill from getting it into their respiratory system. You can google it, if interested.

                        You have all my best wishes for success in the days ahead. Living a full life while treating MS is murderously difficult. You have my sincere thoughts and prayers. I am so rooting for you!

                        BTW, I thought your line in another thread about how to disclose MS when dating was hilarious… “there could be some great parking spots in our future”. Maybe you should do stand-up; you have a wonderful sense of humor! Laughing is a healthy medicine.

                        Lastly, I must add that although my spouse’s balance has gotten better on Ocrevus, other things have gotten worse. Notably, fatigue is much worse and MS symptoms have increased substantially since stopping Tysabri. Couple that with the distinct possibility of an increased cancer risk with Ocrevus and I am beginning to doubt the wisdom of switching.

                        Best wishes!

                        Comment


                          #27
                          dyin_myelin
                          . . .I wish I was married to myoak.



                          Ditto!!!!
                          The best read i've had for ages.
                          Thanks

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