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    Coronavirus COVID-19

    This virus has the distinct possibility of becoming a major disruption and a major danger to people with MS.

    It is not too early to begin thinking about how you will personally deal with the situation should COVID-19 continue spreading. I am among the many who believe it will.

    Here are some of my thoughts...

    First, regarding treatment, it is important to understand the rate of serious infections with various MS DMT's. Based on a national study in Sweden between 2011 and the end of 2017 involving 6421 PwMS here are the results...

    Glatiramer acetate (Copaxone) had a serious infection rate of 5.2 per 1000 patient years

    Interferons... 8.9

    Tysabri... 11.4

    Gilyena... 14.3

    Rituximab... 19.7
    Ocrevus... 19.7 (predicted)

    Ocrevus, not in the study, is virtually identical to rituximab, both kill CD20 B cells so the infection rate is fully expected to be virtually identical.

    Please understand that the anti CD20 therapies are meds which kill infection fighting immune cells, rituximab and Ocrevus, take months and often years, to repopulate those cells. All other MS meds take considerably less time to repopulate those cells because they have not killed them.

    For instance, Gilyena sequesters B cells in the lymph system and Tysabri prevents them from crossing the BBB and getting into the CNS, but neither kills the B cells. So, coming off those meds and the others for MS, quickly reconstitutes the immune system, if need be. Of course, slowing MS is why they are taken in the first so stopping is not a great option.

    The point here is that information and knowledge are valuable to decision making. Personally, I cannot imagine a new patient going on Ocrevus with the possibility of COVID-19 becoming more prevalent. To me, it seems like needless risk when other meds are available with less rates of serious infection and which, if discontinued, do not require months or even years to reconstitute the immune system's infection fighting B cells.

    My second thought is that I recall a Canadian national study which found 24% of PwMS died of pneumonia. COVID-19 is a respiratory virus, easily spread, not all who have it show symptoms, but it is dangerous to weakened immune systems.

    I believe PwMS should begin thinking about how they might avoid exposure... social isolation, for example. I'm saying you should not isolate right now! I'm saying think about what you are going to do if the virus becomes widespread. Seriously.

    Also, here is the Johns Hopkins site for tracking COVID-19 in each country...

    https://gisanddata.maps.arcgis.com/a...23467b48e9ecf6
    Last edited by Seasha; 03-07-2020, 05:01 PM. Reason: per request

    #2
    I'm afraid I have to agree. I've already been intending to stop the Ocrevus just because of the non-stop colds and infections I've had since starting it last fall. Based on my age and the length of time I've been dealing with MS symptoms, it was a long shot for me anyway.

    My major relapses have occurred every 3-4 years for the past 4 decades, so I'd need a minimum of 6 more treatments before we see if the Ocrevus is working for me. I don't want to spend another few years like these past months, particularly not with the threat of a new flu and the knowledge that I'm prone to getting pneumonia anyway.

    I'm already limiting my contact with outsiders, but it worries me that my closest relatives are out and about every single day and could wind up being a carrier. There's just too much that isn't known about this and too many people who think "It can't happen to me."

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      #3
      This topic has been on my mind a lot lately. I know my immune system is shot and this year has been the worst. I came down with a bad cold on December 31 which became bronchitis, I was on prednisone twice for 5 days each time and antibiotics for 2 weeks. I never fully recovered when it became very windy for several days which stirred up dust and pollen and my allergies then kicked up with some of the worst congestion I've ever had. This of course lead to asthma attacks and breathing treatments were needed. I am still suffering with respiratory issues but I am a little better, the last 2 months have been rough for me.

      To make matters worse, if you've watched the coverage of the Corona virus and seen a military base in northern California where the cruise ship passengers were taken for quarantine, that is where I work. The hotel where these folks are at is 2 blocks from my office. Also, the first case of someone contracting the virus from community transmission is in my hometown and the hospital she first went to is about 2 miles from my house. I understand nearly 100 people are now being monitored that came in contact with her. So there are people possibly going to the same grocery store that I go to that may have been exposed but I still need to eat!

      This is literally too close to home, the virus is obviously all around me at work and where I live. I am limiting going out in public and am using sanitizer often and hoping for the best. I understand Israel may have a vaccine ready very soon, I sure hope it works!

      Driving to work I pass the quarantine area which is fenced off and one of the folks in quarantine was walking around with a camera on a selfie stick waving to us while wearing a big pink bunny suit! This is like living in an eerie sci-fi movie!

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        #4
        FWIW Dr. Aaron Boster, YouTube's expert MS neurologist, just posted a video today entitled, "Coronavirus and MS: What you need to know".
        59M / RRMS / Dx1987 / Ocrevus

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          #5
          Thanks myoak and Golgotha for the info.

          MS TOO - wow. Sorry to hear how close you are. Stay vigilant on hand washing. Not sure what you do, but any chance you can work from home?

          Nora's - have you discussed stoppng Ocrevus with your neuro amid your latest concerns? Curious what your neuro said.
          Kathy
          DX 01/06, currently on Tysabri

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            #6
            Hello pennstater, yes we are remaining vigilant with the hand sanitizer and washing. My wife and I needed to get some groceries last night. We waited until later than usual hoping there would be less people and there were, we then used sanitizing wipes to clean the cart handle and the first thing we did when we got back in the car was use a liberal amount of sanitizer!

            I am an environmental scientist, program manager and I currently work 4 days/week. One of those days is teleworking. My supervisor just told everyone in the office to take their computers home to make sure they can connect to the work server in case an order is made to stay off the base. I can still perform about 80-90% of my work while teleworking and I am hoping they give the order to do so soon.

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              #7
              Thank you for your replies and comments, my thoughts are with each of you.

              The Aaron Booster video link is well worth watching; it can only help.

              Importantly, he mentioned that neurologists in areas of Italy where coronavirus has become prevalent are modifying MS treatments because of the virus. You can be sure the various rates of serious infections listed above are playing a central role in treatment modifications.

              Balancing risk - reward is nuanced and is unique to each individual owing to many, many factors including MS DMT, age, health, state of disease, physical location, etc... really a ton of factors which make blanket recommendations less than ideal. We do know Italian neuros are modifying MS treatment because of the COVID-19.

              That said, each person must make risk assessments for themselves as conditions change.

              Even though my spouse is already on extended dosing of Ocrevus and gets infusions based blood work rather than the calendar, there is no way she will get another infusion of Ocrevus before COVID-19 is adequately controlled, in our estimation.

              Again, Ocrevus (and rituximab) is unlike other MS DMTs in that re population of immune cells takes so much longer than other DMTs. I have not looked at Lemtrada and I don't know if Lemtrada depletes B cells but if it does then I would put it in the same category as Ocrevus. I have not studied it at all.

              Also, please keep in mind that coming off MS meds increases the risk of disease activity. I don't have the stats at hand but my guess is that Gilenya and Tysabri are the two most problematic to suddenly discontinue but there are techniques that can minimize rebound.

              I am definitely not suggesting anyone discontinue their MS med. However, the changes being made by Italian neuros may help inform our individual considerations as we figure out what do to in our own households.

              As if treating MS wasn't already a task for the wisdom of Solomon.

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                #8
                I am not a medical professional. I am a fairly intelligent guy with a nasty case of MS. I suggest people not panic. Ocrevus has been very good for me. I'm not messing with it. I'm more worried about the flu. I'm taking my usual precautions. Best advice: turn off the TV. There's a lot of media frenzy going on. Remember the old media adage: if it bleeds it leads. Take care of yourself, exercise reasonable precautions, and don't panic. You'll be fine.

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                  #9
                  I'm on rituximab and have my 11th infusion coming up soon. I have no plans of skipping or delaying my next dose.

                  Prior to rituximab, MS wasn't stable and hadn't been for some time. I had been on copaxone, betaseron, rebif, Gilenya, IVIg and tecfidera. I had 3 bouts of shingles while on Tecfidera. I believe I got the flu one time in the past 5 years after my wife was infected.

                  Before there was a coronovirus scare we were all supposed to did from the bird blood, swine flu, sars, Ebola, etc, etc. Like those other diseases, I believe the threat is being overstated for monetary and political purposes.

                  Saturday night I went to a MS banquet with nearly 1,000 people and enjoyed myself. I'm not above taking precautions, but also not going to live in a self-imposed quarantine unless things get much worse than they are.

                  Living in Austin we're about to have a grand musical festival (SXSW) with multitudes of people in confined spaces. There's a few thousand people that signed a petition to cancel the event. It won't be cancelled... life continues as it should.

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                    #10
                    On Tysabri and getting my infusion Wed. Still JCV negative and every 4 weeks. Don't have in front of me, but it is around my 90th.

                    I contemplated moving it, not for coronavirus, but I have had a dry cough for 2 months. Saw ENT today and also spoke with neuro - both said no reason to postpone. All test for infection and virus negative.

                    That being said, if I lived in the area where there is the cluster in Washington, I would consider and do more risk assessment.

                    If anyone does consider skipping, please review with your neuro. Some meds can have serious potential consequences when stopping and need to be managed to limit risks.

                    Marco - glad to hear you are doing better and out and about.
                    Kathy
                    DX 01/06, currently on Tysabri

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                      #11
                      pneumonia vaccination

                      I am also on rituxam and don't plan to change any plans. However I am making sure I am current on vaccinations, particularly pneumonia.

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                        #12
                        In Italy

                        I live in Italy and have been going about my normal daily activities. I do wash my hands frequently but getting any hand sanitizer is hopeless. It is all sold out. I stopped my DMT over two years ago and have been stable since then so I don't have to worry about the medicines effect. I recently saw my neuro but it was before the outbreak in Italy so he didn't have anything to say about the virus.

                        Everyone needs to make the best choices for themselves with the advise of their doctors. I hope everyone will remain virus free.

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                          #13
                          Marc Lipsitch, a professor of epidemiology at the Harvard Chan School of Public Health (HSPH), and director of the school's Center for Communicable Disease Dynamics estimates that 40 -70 percent of the world's population will get COVID-19.

                          In the US that with a population of about 330 million that translates into 132 to 231 million people. If the mortality rate remains just below 1% that would translate into 1 million to 2 million deaths from this virus just in the US. No, it won't wipe out civilization but it won't be a happy time for many.

                          A 1% mortality rate means 99% of people will be okay, however, the asymptomatic spread of this disease is concerning, especially to the vulnerable elderly and those with weakened immune systems such as those taking immune suppressing or immune modulating drugs.

                          If this virus continues spreading, as is likely, new realities will present themselves more clearly. Turning off the news unfortunately will not turn off the virus, even our illustrious political leader finally woke up to that reality, thank heaven, but others may be still sleepwalking about this danger, JMHO.

                          Comment


                            #14
                            Originally posted by Myoak View Post
                            Marc Lipsitch, a professor of epidemiology at the Harvard Chan School of Public Health (HSPH), and director of the school's Center for Communicable Disease Dynamics estimates that 40 -70 percent of the world's population will get COVID-19.

                            In the US that with a population of about 330 million that translates into 132 to 231 million people. If the mortality rate remains just below 1% that would translate into 1 million to 2 million deaths from this virus just in the US. No, it won't wipe out civilization but it won't be a happy time for many.
                            Based on that prediction, up to one billion people in both China and India will contract the virus. Quite dire, even Biblical in proportion.The problem is scientists have made similar claims about SARS, Ebola, bird flu, swine flu, Zika, etc, etc, and have all been wrong.

                            I have no idea how my body would handle the coronavirus, but I know what MS was doing prior to rituximab.

                            So what's really the logical point of skipping an infusion? B-cells won't magically repopulate if I skip a dose. Prior to my next infusion, scientists will already be testing multiple vaccines and potential treatments. One or more will most likely be available LONG before my b-cells resemble a normal level.

                            So I will take reasonable precautions, but I cannot live in fear of something I cannot control.

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                              #15
                              Originally posted by Marco View Post

                              So I will take reasonable precautions, but I cannot live in fear of something I cannot control.
                              Love this. Basically how I try to approach life with MS, and life in general.

                              I heard today that for those diagnosed, 80% are asymptomatic. I take some comfort in that as well.
                              Kathy
                              DX 01/06, currently on Tysabri

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