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    Ocrevus ad available here

    If you haven't seen the ad yet, you can view it here:

    https://www.youtube.com/watch?v=M5OWnO8_NDs
    ~ 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.

    #2
    Unfortunately MS has owned me for so long that nobody else seems to want me now.
    I do wished I could’ve taken this drug 14 years ago. I’m grateful to have had the opportunity a year and a half ago. It’s made a bit of a difference
    It was one agains't 2.5million toughest one we ever fought.

    Comment


      #3
      Originally posted by oceanpride View Post
      Unfortunately MS has owned me for so long that nobody else seems to want me now.
      I do wished I could’ve taken this drug 14 years ago.
      I agree with you, oceanpride.

      Newly dx'd persons with PPMS will most likely have far less problems to deal with, thankfully.

      Glad to know that you are seeing some benefits.

      Ocrevus is being called a 'game changer' for PPMS when started early.

      https://multiplesclerosisnewstoday.c...logy-ocrevus/?

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        That is a good report KoKo
        I mean the drug must be panning out if they are confident on putting advertising up on it. Thanks for sharing.
        It was one agains't 2.5million toughest one we ever fought.

        Comment


          #5
          Thank you KoKo for the infor. I hope the studies show we can have a shorted infusion time. It would be great if we could but I'm not complaining.

          It's good to know about the PML cases.
          God Bless Us All

          Comment


            #6
            Originally posted by REG53 View Post
            Thank you KoKo for the infor. I hope the studies show we can have a shorted infusion time. It would be great if we could but I'm not complaining.

            It's good to know about the PML cases.
            Hello REG

            Also worth noting, are the last two paragraphs:

            He cited Genentech’s track record of more than 120,000 people treated with Ocrevus worldwide so far and emphasized that “the safety remains as we saw in the control trials. The benefit-risk remains very favorable and very positive, so yes, we think that this has improved [MS] patients’ long-term outcomes.

            “If you look at the U.S., Ocrevus now is the number one prescribed drug for new treatment, as well as those switching from another treatment. The data speaks for itself,” Garren concluded.

            Take Care
            PPMS for 22 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              KoKo, this is so encouraging. Thank you so much.
              God Bless Us All

              Comment


                #8
                My apology if what I have to say is a bit sobering.

                First, Ocrevus is one of the most effective DMTs for MS.

                However, we need to understand what it is and what it does in order to use it in the safest way possible.

                Ocrevus is an immune cell depleter. It depletes certain immune cells that cause havoc in MS but those cells are also critical to the immune system doing its job against infections, serious infections, cancer, etc. So, over-depleting them over a for period of time may lead to problems a more functional immune system would normally take care of.

                The link KoKo provided has good news and is good information, however, it is an interview with an Ocrevus drug company representative so I think we can expect an emphasis on the mostly good news and not necessarily any of the bad news. And, there was a bit of bad news reported on Ocrevus at this ECTRIMS, also.

                I am going to provide a link for those interested and then a few comments from a notable researcher...

                https://multiple-sclerosis-research....-cd20-therapy/

                "An important highlight of ECTRIMS this year was the data on the safety of the anti-CD20 therapies as a class. It is clear that prolonged, and sustained, B-cell depletion is not safe. Hypogammaglobulinaemia will become a problem with the risk of both common and opportunistic infections.

                Stephen Hauser presented the 7-year ocrelizumab safety data and there is a clear uptick in infections in year 7. His poster also included a probable opportunistic infection signal. As of January 2019, there were six potential serious opportunistic infections that had been reported from the ocrelizumab clinical trials...

                Continuous anti-CD20 therapy prevents you from forming germinal centres (where B-cells get educated and selected to make antibodies) in lymph nodes and the spleen. In other words, the anti-CD20 therapies result in what I refer to as a functional splenectomy. This causes a scotoma, or blind spot, in your immune system which means you can’t mount a vigorous immune response to new infectious agents or vaccines. In reality, your immune responses are muted...

                I highlighted in my hot topics talk on ‘DMTs in RRMS 2019: what remains to be achieved’ about the problems of having a functional splenectomy on anti-CD20 therapies. I recommended that all MSers be vaccinated with the polyvalent pneumococcal vaccine (Pneumovax) and possibly the vaccines for Haemophilus influenzae type B and Meningococcus. In addition, all MSers should have the annual flu vaccine, but with the inactivated component flu vaccine and not the live flu vaccine.

                In fact, MSers on anti-CD20 therapy should avoid coming into contact with recipients of the live flu vaccine in case it becomes more virulent and infects them. Please note the live flu vaccine is used in the UK in young children and it is recommended that children who have parents or family members at home on immunosuppressive therapies should not have this vaccine.

                Another option open to people on longterm anti-CD20 therapy is antibiotic prophylaxis against infections with these encapsulated bacteria. I suspect this may be necessary when MSers develop hypogammaglobulinaemia and recurrent infections, similar to the NMO cases described below. It is clear that anti-CD20 therapies will need annual immunoglobulin levels measured so that if hypogammaglobulinaemia develops MSers can we warned. I suspect immunoglobulin replacement therapy will only be required in the case of recurrent infections, for example, sinus or chest infections; for example, the NMO patient on longterm rituximab who developed bronchiectasis.

                I would also recommend that MSers on immunosuppressive therapies wear a medic-alert bracelet that states they are on an anti-CD20 therapy. This would help HCP in an emergency if you are too sick to provide a history. An American colleague told me about one of his ocrelizumab-treated patients, who was fit and well, who died suddenly in the emergency department after presenting with a high temperature and not feeling well. I suspect the cause of death was probably septic shock from one of the encapsulated bacteria discussed above.

                The facts that (1) the clinical development programme of ocrelizumab was stopped in rheumatoid arthritis and lupus because of infections and excessive number of deaths, (2) that there is a herpes zoster signal on ocrelizumab, (3) there is blunted vaccine response, in particular to pneumococcus, and (4) ocrelizumab reduces immunoglobulin levels explains why there are infectious complications on ocrelizumab.

                So if you are on rituximab, ocrelizumab, ofatumumab or any othe anti-CD20 please be vigilant and take care. On the other side of the coin are the benefits of these treatments and their ease of use and low monitoring burden. As with all DMTs the risks need to be balanced against the benefits."



                PROF Gavin Giovannoni
                September 23, 2019 at 8:26 pm

                "I got a long email from Roche today in relation to this post. I am surprised they bother reading this blog.

                Roche just doesn’t get the concept of ‘Known-Unknowns’ and black swan events. It’s as if they are data junkies feeding on their own cool-aid. The pharmacovigilance data they get is out of date the day it arrives on their servers. It is hard to believe that the email I received is from a company that canned the SLE and RA ocrelizumab programmes because of an infection signal and that was at a lower dose of ocrelizumab than we are now using in MS.

                Roche/Genentech have mountains of rituximab data to feed on and learn from and understand the immunology of longterm B-cell depletion in humans. Do they really think indefinite B-cell depletion won’t come without an infection risk? How can any company that presents data that MSers on ocrelizumab can’t mount an appropriate immune response to pneumococcal vaccine ignore, or play down, the infection risk to encapsulated bacteria?

                Clearly, Roche staff don’t look after patients with MS and have no idea what it is like to counsel patients about the risks and benefits of DMTs. Being transparent and honest is the only way to approach the risks and benefits of treatment; this includes ‘known-unknowns’, which this is post is trying to address.

                On the other side of the coin is the benefits of anti-CD20 therapy. In the context of active MS, they probably outweigh the risks of the ‘known-unknowns’; at least in the short- to intermediate-term. With regards to the long-term, only time will tell."

                Comment


                  #9
                  Myoak, It is A LOT sobering and not encouraging, a bit depressing actually. I know thinking positive is good medicine so that's what I am going to do and keep praying.

                  Any DMT's on the horizon that could be better than Tysabri or Ocrevus? I wished I could go back to Tysabri but neuro said no because of being jcv+.

                  Thank you for all the infor. you provide.
                  God Bless Us All

                  Comment


                    #10
                    Originally posted by Myoak View Post
                    The link KoKo provided has good news and is good information, however, it is an interview with an Ocrevus drug company representative so I think we can expect an emphasis on the mostly good news and not necessarily any of the bad news. And, there was a bit of bad news reported on Ocrevus at this ECTRIMS, also.
                    Thanks Myoak ~

                    The article that I provided seems well balanced, and does provide several paragraphs regarding Ocrevus' Safety Profile.

                    The info is not as technical and in-depth as you give, however.

                    Take Care
                    PPMS for 22 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      It’s good to hear all angles myoak. Thanks for all the info. I very much appreciate this board and all the input. For us people with MS this is very important to try and stay informed.
                      It was one agains't 2.5million toughest one we ever fought.

                      Comment


                        #12
                        Hi MyOak,

                        I have to admit to not reading all of your threads & posts.

                        Since I am PPMS, I paid attention to the latest PPMS authorized treatment Ocrevus, as discussed in the MSW threads / links, etc. I find it necessary to comment....

                        You have the ability to parse information and present it in a fashion more here at MSW can follow, with source material or links as applicable, and you always speak peer-to-peer, never pedantic.

                        This is done without first hand experience! This is not just compassion, there is also a passion to cut through the pharmaceutical clutter.

                        Clear observations are made available to others, not as thorough in their search for truth ie, - "It’s as if they are data junkies feeding on their own cool-aid. - Giovannoni"

                        Some of us find the words, some don't, but all respect a sincere thread. Thank you.

                        Comment


                          #13
                          Hello,

                          KoKo, your post was excellent and informative, you are a dear!

                          Thank you, everyone for your excellent comments!

                          Please excuse the length of my posts, I’m sure they are way too long.

                          IMO, the PPMSers on Ocrevus have made a good choice! Ocrevus will very likely slow progression and preserve function for most! It is important to keep in mind that there are pluses and minuses with EVERY MS DMT.

                          I believe what some find concerning is that dosing Ocrevus every 6 months keeps the immune system almost permanently suppressed. Short term suppression probably affects health very little. Medium term provides more time for something to go wrong, however, overall these serious infections seem to have appeared only occasionally.

                          But long-term, and by that, I mean 5 years and more, what risks to health might we see from permanently suppressing our immune system rather severely with Ocrevus? That is the unknown.

                          To me, it seems reasonable that 6-month dosing with Ocrevus may over-deplete the immune cells necessary to fight disease and therefore make a person more vulnerable.

                          So, we asked the neurologist if he would agree to do infusions based on blood markers (CD19 and IgG) rather than every six months. Ocrevus diminishes CD19 (a type of B-cell) which many believe play a huge role in MS. The thought is that if you diminish those cells, MS is diminished. HOWEVER, THIS IS ONLY THEORY! Perhaps, Ocrevus is working in other, unknown ways to slow MS.

                          So, my spouse will only get the next infusion of Ocrevus when she has repopulated CD19 and increased IgG, which fights infections. If her blood test shows that CD19 and IgG remain very low what good comes from getting another infusion? Why keep killing something already dead? Can harm come from getting more than enough Ocrevus? It could.

                          Ocrevus kills, or reduces, other types of immune cells besides CD19 so why keep infusing Ocrevus and killing those cells if CD19 remained wiped out? Each person re-populates CD19 at their own individual rate. A few people may need to get infusions every 6 months to keep CD19 in check.

                          Others may take 10 months or a year to re-populate those cells. Some people may take 2 years, or 3 years, and I believe I read that possibly 5% could take 4 years to re-populate CD19 cells. In theory, some MSers could possibly go 4 years before their next treatment, if their CD19 remains very, very low.

                          We do know that after 2 years of infusions on Ocrevus during trials those who stopped taking it for the next 18 months had no more MS lesions or symptoms than as those who continued getting it every 6 months.

                          No one I know of is talking about this much but there is clearly a group of neurologists, possibly two groups in the US, treating patients by assessing blood makers rather than watching 6 months go by on a calendar. I’m sure the drug maker is disturbed because dose extension is bound to reduce sales. So, I don’t expect to get balanced info from them. Their info and interest get slanted toward sales. My interest is slanted toward health, as most others are, also.

                          Please understand that Ocrevus is a very, very good MS medicine! This stuff about infusing by blood makers must be proven by data. Neuros do not change practice willy-nilly. The great majority will only alter the 6-month infusion schedule when data is conclusive.

                          The unfortunate reality is that since it is not in the drug company’s financial interest “conclusive” data will prove elusive. I believe they have a financial interest in dragging their feet.

                          Years ago, dose extension made scientific sense on Tysabri, and now data has proven it significantly reduces health risks.

                          To me, dose extension makes scientific sense on Ocrevus, and I believe data will prove it is wise, also. It may take a few years of collecting data from people like my spouse; those who are infusing based on blood markers not a 6-month schedule for conclusive proof, JMHO.

                          Best wishes!

                          Comment


                            #14
                            Originally posted by 502E79 View Post
                            Hi MyOak,

                            I have to admit to not reading all of your threads & posts.

                            Some of us find the words, some don't, but all respect a sincere thread. Thank you.
                            Yes! Thank you, Myoak. Your opinions are certainly well respected and appreciated!
                            1st sx '89 Dx '99 w/RRMS - SP since 2010
                            Administrator Message Boards/Moderator

                            Comment


                              #15
                              Originally posted by Myoak View Post
                              So, my spouse will only get the next infusion of Ocrevus when she has repopulated CD19 and increased IgG, which fights infections. If her blood test shows that CD19 and IgG remain very low what good comes from getting another infusion? Why keep killing something already dead? Can harm come from getting more than enough Ocrevus? It could.

                              Ocrevus kills, or reduces, other types of immune cells besides CD19 so why keep infusing Ocrevus and killing those cells if CD19 remained wiped out? Each person re-populates CD19 at their own individual rate. A few people may need to get infusions every 6 months to keep CD19 in check.

                              Others may take 10 months or a year to re-populate those cells. Some people may take 2 years, or 3 years, and I believe I read that possibly 5% could take 4 years to re-populate CD19 cells. In theory, some MSers could possibly go 4 years before their next treatment, if their CD19 remains very, very low.
                              Makes sense to me - very significant reasoning.

                              Take Care
                              PPMS for 22 years (dx 1998)
                              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                              Comment

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