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    #16
    Originally posted by ru4cats View Post
    The reason I asked is because I know of a person from a FB group that went from Tysabri (quit to have some kiddos) to Ocrevus and will now return to Tysabri at the beginning of next year. I read her post and red flags were flying...JC+ with a high titer, had been on Tysabri for 5 years, and now Ocrevus, an immunosuppressant. She now has three negative checks and is going back. I called this to her attention (as delicately as I could...you've taught me well!), and she did say she will return to a 6 week infusion schedule. I was just trying to see if you had any info. I was surprised her neuro approved her, especially with young kiddos. I just fear for her future. Thanks. Kris
    So many interesting things in your reply.

    First, it is interesting that she wants to go back to Tysabri, and interesting her Neuro apparently agrees. I wonder what is happening on Ocrevus that makes going back to Tysabri with a high JCV titer desirable?

    Not that is surprises me from the standpoint of which med I believe is better. I clearly believe Tysabri wins. But it has that PML concern, of course, and that concern is too much for some, psychologically. All I can theorize is she must have felt a great deal better on Tysabri. Certainly, something to consider. Did she ever say why she wants to go back to Tysabri?

    As far as pregnancy on Tysabri there is a thread about that topic. I read a comment about a study but not the study itself so what I'm about to say is unsupported hearsay... I believe I read where women who were pregnant and remained on Tysabri fared better than those who quit. PLEASE DO NOT QUOTE ME ABOUT THIS IT IS ONLY HEARSAY. The reason they fared better, I believe, is because the ones who stayed on it did not suffer from MS as much as those who stopped. Plus, Tysabri has some, but very little effect on pregnacy as we saw in the 350 Tysabri pregnancies thread.

    Yes, I realize the prescribing lit suggests stopping Ty for pregnancy but it may be more 'cover your butt so you don't get sued' rather than a true medical concern.

    Honestly, I think this lady may be fine going with 6 week infusions because of the dramatic reduction in PML risk on dose extension, even though she has a high titer. As you know, my spouse always had a high JCV titer and she did spectacularly well on Tysabri even after going 8 weeks between infusions.

    Kris, are you aware that now that she is on Ocrevus we are again involved with dose extension? Since blood makers can be tested, her infusions are based on when CD19 B lymphocytes re-populate. She gets a blood test every two months to determine when the next infusion occurs. We are deeply, deeply thankful for the neuro who agreed to proceed in this manner. So, right now, she has gone 7 months between infusions and will go at least 8 months because that is when the next blood test is scheduled. Likely, it will show she does not need the infusion even then.

    Why have we done this, you may ask? Well, if something is already dead (CD19 cells) why keep killing it? Test to see if those cells have come back and if not, there may be no need for the Ocrevus. What is unknown at this point is if MS symptoms will worsen. We think not, but we won't know until data is collected from people doing the same kind of dose extension, testing for CD19.

    Of course, since Ocrevus kills other functioning immune cells, being the strong immunosuppressant that it is, it will be beneficial to a properly functioning immune system if those other immune cells are not reduced by Ocrevus. A more properly functioning immune system would lessen the risk of serious infections, possibly cancer, also.

    Ocrevus is a med that is great for reducing MS progression, much like Tysabri in that regard. But, why not reduce the risk of serious side effects, if possible? Therefore, we are doing dose extension, thanks to our super, super, doctor. As you know, Ocrevus is scheduled to be infused every 6 months. Our belief is extending time between doses will keep MS in check, cost far less, and reduce heath risk...a win, win, win. A hopeful repeat of Tysabri in the benefits of extending time between doses.

    I believe it was 2012, 2013 at the latest when I argued fervently with the treating neuro to put my spouse on dose extension because it made so much sense. Fortunately, that turned out spectacularly well. Today, virtually everyone on Tysabri who can ( some are unable due to very aggressive MS) does dose extension.

    I cannot predict, no one can without confirming data, whether dose extension on Ocrevus will turn out the same BUT I have many, many reasons to believe it will. It just makes sense from virtually every angle of view. Much like Tysabri did to me way back when.

    The reason I give topics like this so much study is because they are literally life and death, good health vs poor health. And often, the people at risk are limited by how much time and energy they can invest. Neuros are awfully busy, also. So, I study to learn for myself and apply what I learn to treatment for my spouse and anyone if else is interested, that's fine.

    I am not a doctor. But notably, if you will indulge me... the 2002 belief that Tysabri would become a terrific medicine was largely correct, the 2012 belief that dose extension with Tysabri would prove wise was largely correct and my guess is that the 2018 belief that dose extension on Ocrevus will prove very valuable, also. I also believe talking about it in forums like this will, in time, save lives and preserve health. IMO, in 4 or 5 years when sufficient data emerges, most people will be doing dose extension on Ocrevus just as they are today on Tysabri.

    Ha! There you go Kris, my guess for the future!

    Comment


      #17
      Myoak, you are my goto source for all things MS DMD related. I do hope this woman does well on her return to Tysabri. Your wife is SO lucky that she has you, but then I'm sure I don't have to tell her. I don't doubt you are correct that extending the infusions of Ocrevus will become a "thing", but then you knew that about Tysabri back in 2014, long before anyone else. I'm on a 49 day infusion schedule and finally feel like I have taken my life back from the daily grind of everything MS. All the best. Kris

      Comment


        #18
        Originally posted by ru4cats View Post
        Myoak, you are my goto source for all things MS DMD related. I do hope this woman does well on her return to Tysabri. Your wife is SO lucky that she has you, but then I'm sure I don't have to tell her. I don't doubt you are correct that extending the infusions of Ocrevus will become a "thing", but then you knew that about Tysabri back in 2014, long before anyone else. I'm on a 49 day infusion schedule and finally feel like I have taken my life back from the daily grind of everything MS. All the best. Kris
        Thank you, Kris for your kind words.

        Isn't it refreshing going from an every 28 day infusion schedule to a 49 day schedule? Personalizing dosing schedules for individual patients as much as possible is a good thing, IMO. My wife had little trouble going straight to 8 weeks between infusions on Tysabri. However, a close friend went 8 weeks and developed a new lesion for the first time since being on Tysabri, so she went to a 7 week schedule and has had no new problems. 6 or 7 weeks between doses seems to work pretty well for many on Tysabri.

        Another point... no published studies yet but I believe something else good may be happening during dose extension besides diminishing PML risk. I just betcha the conversion rate from negative to positive slows on dose extension, also. We know there is definitely better immune surveillance against the JCV during dose extension because it has been proven beyond doubt to lower PML risk.

        My guess is that better immune surveillance during dose extension against the JCV means better immune surveillance against JCV getting established in the first place. Meaning the conversion rate from negative to positive would be reduced. I'd love to see that data mined out... and in time we will see it, I believe.

        It makes a great deal of sense that dose extension would reduce the rate of JCV conversion. Remember, no JCV, no PML. You can understand why I pounded the table so earnestly... because of the literal and distinct possibility of saving the life of a loved one or possibly escaping a disease that is often horrific even when not deadly.

        Kris, it is pleasant to think that I may in some part have encouraged or assisted your efforts in securing better health. I have no doubt that some MSers with aggressive MS require Tysabri every 28 days, but many do not need it that often and can actually do BETTER with overall health by going more than 4 weeks because their immune system is more intact with less Tysabri. Same goes for Ocrevus.

        Dose extension on Ocrevus has even more reasons to believe better health will result, IMO. Not everyone, but many on Ocrevus could benefit in improved overall health by extending time between doses, IMHO. I'm truly thankful that again, my spouse is involved along with others, with the hope dose extension will work so well it changes present standard practice of infusing every 6 months.

        Forgoing the details of it at present but IMHO, the science suggesting dose extension would be beneficial on Ocrevus is very, very strong. People re-populate CD19 (CD20) B-cells at different rates due to many factors. Obviously, we are all different ages, different weights, have different genetics, etc. It appears some people re-populate those cells in 6 months, however, a few may take as much as 4 years. Most, possibly around 10 months as an average. We won't know for sure what the average is for those on Ocrevus is until the data is collected. Also, we won't know the effect Ocrevus dose extension has on MS until data is collected on those doing it.

        There are rock solid scientific reasons, IMO, to believe dose extension will be beneficial with Ocrevus. It is speculation, yes, but speculation informed by science.

        Kris, hopefully, these discussions encourage others as even as our past discussions encouraged you to find a dosing schedule that fits you best for the best life possible given what we all deal with... MS.

        What a joy and privilege to share with you, my friend.

        Comment


          #19
          There has been an update about extending time between doses of Tysabri...

          EID = Extended Interval Dosing (average 35 - 43 days between infusions)

          SID = Standard Interval Dosing (average 29 - 30 days between infusions)


          Risk of natalizumab-associated PML in patients with MS is reduced with extended interval dosing.

          https://www.ncbi.nlm.nih.gov/pubmed/31515290

          RESULTS:
          This study included 35,521 patients (primary analysis: 1,988 EID, 13,132 SID; secondary analysis: 3,331 EID, 15,424 SID... Mean average dosing intervals were 35.0 to 43.0 and 29.8 to 30.5 days for the EID and SID cohorts, respectively... Relative risk reductions were 94% and 88% in favor of EID for the primary and secondary analyses, respectively...

          CONCLUSION:
          Natalizumab EID is associated with clinically and statistically significantly lower PML risk than SID.

          Comment


            #20
            Myoak,

            Quick question. One statement stood out, "The tertiary analysis included no cases of PML with EID." I thought you said there had been cases with EID. Wouldn't this study have picked them up?

            As always, thanks for all your hard work.

            Kris

            Comment


              #21
              Originally posted by ru4cats View Post
              Myoak,

              Quick question. One statement stood out, "The tertiary analysis included no cases of PML with EID." I thought you said there had been cases with EID. Wouldn't this study have picked them up?

              As always, thanks for all your hard work.

              Kris
              Hello Kris,

              The first I personally heard that there had been some cases of PML during dose extension was from the director and treating neurologist at the MS center we use. I don't know how many cases there have been but he definitely said there had been a few cases.

              I only have the abstract of the study above so I don't know exactly what they looked at in the tertiary analysis. However, there must have been a couple of cases in the first two groups analyzed or the risk reduction would have been 100%, not 88% and 94%.

              What really amazes me in addition to the remarkable 88% and 94% reduction in PML risk is that in the first two groups together there were 5319 on EID and 28,556 still on SID! Dear God, what on earth are so many doing on standard 4 week dosing when the majority could be greatly reducing the risk of PML on extended dosing??!!!!!! WOW!

              It just goes to show how slowly clinical practice changes and stresses the importance of a patient being informed and advocating for the best treatment possible.

              After all these years, many, if not most, neuros are still stuck in the mud following Biogen's guidelines of infusing every 4 weeks. They are, in many cases, needlessly putting patients at risk of one of the most horrible diseases imaginable. I just don't get it.

              Yes, the first two years on Tysabri there is very risk of PML, so for the first two years, 4 week dosing is okay. Also, some MSers with aggressive MS may need Tysabri every 4 weeks but how about the rest, the great majority?

              Also, if you are JCV negative 4 week dosing may be thought to present no danger, however, that may not be the case if 4 week dosing allows conversion from - to + JCV because immune surveillance is poorer on SID 4 week dosing than on EID. We do know that people on Tysabri convert from - to + at a rate 10 times faster than people not on Tysabri so obviously there is a connection between Tysabri and rate of JCV conversion.

              The plain truth is that EID keeps MS in check for most MSers and definitely reduces PML risk so there is no good reason NOT to use EID in most Tysabri users.

              BTW, there is a movement in the EMA (European Medicines Agency) to adopt EID as standard practice. Wow, isn't it shocking how slowy things change when decreasing profits are at issue for a drug company? Good Heavens, talk about intolerable, where is the FDA in all this? Nowhere, from what I see and Biogen apparently isn't going to volunteer to reduce their income, either. That leaves neuros... and we see 5,000 on EID and 28,000 on SID so many neurologists are not doing their jobs so well, either.

              That leaves us, patients and caregivers, to press for changes.

              Sometimes, it makes me very, very angry that the people suffering from a disease must be the ones pushing for changes that are obvious to professionals and informed people.

              There are lots of great doctors doing everything they can for their patients! For these, I am truly grateful.

              However, there are many more treating neuros who could do better with minimal effort.

              Comment


                #22
                Myoak,

                Can't find anything you've said with which I disagree. It truly seems like those of us "in the know" have to fight to make changes we know are in our best interest. Just like you had to fight for your wife's right to transition to EID when it was only through research you realized it was a viable option, I was still having to do the same thing 3-4 years later. It was like all the neurologists were either clueless or possibly unwilling to give up the kickbacks they receive from the big companies.

                I do know of one neurologist what is beginning her Tysabri patients at 6 weeks. However, I also know of neurologist who still advises Copaxone as a viable first treatment. Go figure!

                I'm a member of a FB group when I continue to spread the information on new best practices and highly recommend the infusions should be treatment of choice for most of those with MS.

                Let's keep fighting the good fight.

                As always,
                Kris

                Comment


                  #23
                  Hi All,
                  I have been infused every 56 days for approx 3 years. This Sept was my 130th infusion. I get the JCV test every 6 months now, my Dr. used to do it every 3 for the first 2 years of EID. I am still indeterminate (thank G-d) and my #s before this month were .30 and this month .23 I once went down to .20. My Bio-chemist son thinks it has to do with how well my immune system is working. It appears to make sense.
                  Wishing us all well
                  Linda
                  Linda

                  Comment


                    #24
                    Originally posted by lindaincolorado View Post
                    Hi All,
                    I have been infused every 56 days for approx 3 years. This Sept was my 130th infusion. I get the JCV test every 6 months now, my Dr. used to do it every 3 for the first 2 years of EID. I am still indeterminate (thank G-d) and my #s before this month were .30 and this month .23 I once went down to .20. My Bio-chemist son thinks it has to do with how well my immune system is working. It appears to make sense.
                    Wishing us all well
                    Linda
                    Just had #109 today and blood was drawn for my JC test. I'm at 49 days and holding...all is good.

                    Comment


                      #25
                      Originally posted by lindaincolorado View Post
                      Hi All,
                      I have been infused every 56 days for approx 3 years. This Sept was my 130th infusion. I get the JCV test every 6 months now, my Dr. used to do it every 3 for the first 2 years of EID.
                      Hi Linda Congrats on everything going well. Did you initiate the EID with your doctor or did your doctor suggest it?
                      All the best, ~G

                      Comment


                        #26
                        Originally posted by gargantua View Post
                        Hi Linda Congrats on everything going well. Did you initiate the EID with your doctor or did your doctor suggest it?
                        Thank you
                        I initiated ! I started with every 6 weeks and then he asked me to go to 8 weeks where he said all the data is.
                        Linda

                        Comment


                          #27
                          Originally posted by lindaincolorado View Post
                          Thank you
                          I initiated ! I started with every 6 weeks and then he asked me to go to 8 weeks where he said all the data is.
                          Thanks - your doctor sounds great.
                          All the best, ~G

                          Comment


                            #28
                            Originally posted by gargantua View Post
                            Thanks - your doctor sounds great.
                            He is He's the co-director of the RMmsC..I am so lucky I live a few miles from this world renowned ms center. My not capitalizing ms is not by accident. I refuse to give ms any respect !
                            Linda
                            Linda

                            Comment


                              #29
                              Does anyone know if there are any studies that indicate that dose extension is also valuable for those people who are JCV negative?

                              I don't really understand how "negative" doesn't really mean "zero". I am in the negative range, but it's really just a low level. There isn't much difference between the fine line between negative and positive.

                              I asked my neuro about dose extension but he said he will only broach that conversation if my JC titre levels are positive.

                              Comment


                                #30
                                I am JC-, and I have made the move to extended infusions; I am now infused every 49 days. I made the move because I found the 28 day routine was controlling my life, and now I feel like I am, once more, in control of my life.

                                In addition, less infusions means less drug in your system, and Tysabri is a VERY powerful drug. Studies have found the effectiveness isn’t reduced, and less of this powerful drug allows the immune system to bounce back, potentially preventing another problem from occurring.

                                Needless to say, IMHO, your neurologist needs to reevaluate his decision. I believe he is missing the benefits I mentioned. To each their own, but I love my decision and have no regrets.

                                Comment

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