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    #16
    I understand Dr. Faucci knows something about infectious diseases including Caronavirius:


    https://www.nejm.org/doi/pdf/10.1056...icleTools=true

    Death rate similar to Severe seasonal flu. No panic, just caution.

    Comment


      #17
      Originally posted by Brad1138 View Post
      I understand Dr. Faucci knows something about infectious diseases including Caronavirius:


      https://www.nejm.org/doi/pdf/10.1056...icleTools=true

      Death rate similar to Severe seasonal flu. No panic, just caution.
      Thank you for this info, Brad.
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #18
        I think what's happening here is our reaction to the basic insecurity that life presents to anyone with MS.

        We with MS make choices daily, the same as anyone, one may be temped to say.

        But MS gives us something else, the knowledge that we are never really secure. Health can give one a false sense that things are fine.

        A healthy well meaning person, looking at numbers & statistics presented by media, sees a need to emphasize precautions to one with MS.

        One with MS recognizes that an overabundant consciousness of security simply kills the life we have.

        "We are our choices." - Sartre

        Comment


          #19
          Originally posted by loopey View Post
          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.
          Hi loopey - if you can't get any hand sanitizers there, you can make your own!
          Take 3 parts rubbing alcohol and 1part aloe vera gel and mix together.

          I live in Washington state which has 9 deaths so far. The county where I live is 100 miles or so from the "epicenter" and we have run out as well. People here are cautious, not necessarily in a panic mode, but aware of being prepared.

          Please stay safe!!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #20
            This email thread was posted in A dedicated rituximab group that I belong to.


            Hi Everyone! Some Kaiser Patients have been receiving notifications that their Rituximab infusions are being postponed until after June. I reached out to Dr. Langer and this is her response.

            My question to her..

            Hi! Many in the group are reporting Rituxan infusion postponement until after June. Can you provide a reasoning for this for the group?

            Dr. Langer's Response

            It is because of COVID19. Here is something you can post on the FB page please.


            Please note: for patients on Tysabri or fingolimod, it is probably safer to switch to rituximab, as these drug interfere with T-cell function so we are still starting patients on RTX.

            Best wishes

            Annette Langer-Gould, MD PhD
            Regional Lead for Clinical & Translational Neuroscience
            Southern California Permanente Medical Group/Kaiser Permanente



            COVID19 and Rituximab: Safer to wait if your MS is stable

            The risk of contracting COVID19 in the general population residing in the US is currently uncertain. In other countries, once detected, the spread of disease has been rapid with a 3-4% mortality rate.

            It is uncertain whether impaired B cell immunity caused by rituximab infusions could increase the risk of contracting COVID19 OR increase the severity of infection.

            Over the next 2-3 months we should have a better sense of the general population’s risk of contracting COVID19. We may also learn more about whether B-cell or antibody-mediated immunity plays only a secondary role in viral clearance or is of primary importance.

            For most viral infections, like influenza (the flu), viral clearance is T-cell dependent. These T-cell dependent mechanisms are not affected by rituximab. However, the ability to produce a vigorous antibody response to COVID19 if infected, may be important in reducing the severity of disease. Evidence from previous coronavirus outbreaks (MERS-CoV, SARS) have shown that T cells but not B cells are critical for clearing the infection but also that antibodies against the virus plays at least some role in controlling the persistent phase of infection.

            Patients with peripheral B-cell counts as low as 20 cells/uL can mount adequate antibody responses to vaccines, from which we assume primary viral responses should be okay also. It is thus sensible to allow B-cell counts to return to at least this level before retreating with rituximab even after May/June and even if the last rituximab infusion was more than 1 year ago. We already know from work done in Dr. Fogdell Hahn’s lab that continuous B-cell depletion is not necessary to control MS disease activity.

            The clinical protection afforded by rituximab, particularly in MS, appears to last at least 18 months. Uncontrolled studies show no return of disease activity with average infusion intervals of 2 years. Thus, postponing doses, even up to every 2 years, likely carries a very low risk of return of disease activity. In KPSC, no patients on annual infusions have had return of disease activity on once a year dosing interval.

            Comment


              #21
              Thank you for bringing this topic to the table. I háve known for sometime that the Tysabri has demolished my immune system. I was getting so many infections: UTIs, pneumonia and every kind of skin lesion that my neurologist decided to stretch Ty out to six week intervals. Then my right foot went numb fir a few days, thén the whole leg was getting wobbly and weák. Then the left leg went numb for a week and it was becoming a real struggle to walk.

              So it’s back to every four weeks. We áre sitting on a sword. There is no playing it safe either we get a life threatening infection or rapid MS progression. For me, Losing my ability to cáre for myself because of MS is something I will fight every step of the way.

              Comment


                #22
                It’s a good thing to have the media so people know what’s going on and can take the appropriate precautions
                There’s lots of stuff getting canceled and the economy is hurting. I’m hoping another month or so and we’ll be in the clear. It took about a month or so for it to die down a bit in China. In North America I think we’re on top of it. I’ve been around a lot of sick folks lately and haven’t caught anything. Since starting Ocrevus I’ve been sick only once per year. The last time I got better with out any antibiotics. From what I’ve seen I think my immune system is still working somehow. Time for the infectious disease people to go to work. Time for money to change pockets. Getting sick from the flu is not new. Older and health compromised people dying from it is not new. What’s new here is the hype. I can’t live in a plastic bubble and have to treat my MS because it’s enemy # one right now.
                But I’m still afraid.
                It was one agains't 2.5million toughest one we ever fought.

                Comment


                  #23
                  PS. I think there should be a rituximab tread in with the rest of medications and treatments foram.
                  It was one agains't 2.5million toughest one we ever fought.

                  Comment


                    #24
                    Originally posted by oceanpride View Post
                    PS. I think there should be a rituximab tread in with the rest of medications and treatments foram.
                    Thanks for the suggestion, oceanpride!

                    The reason it hasn't been added is because it hasn't been approved for the use of MS patients. All the other DMT's have been approved. This has been an MSWorld guideline.

                    "It (Rituximab) has been approved by the U.S. Food and Drug Administration (FDA) for treating diseases such as Non-Hodgkin's lymphoma and rheumatoid arthritis (RA). Doctors sometimes prescribe Rituxan for treating multiple sclerosis (MS), although the FDA hasn't approved it for this use. This is referred to as “off-label” drug use."

                    Rest assured that when the time comes, I will add it. In the meantime I have made a sticky in the Med and Treatment forum https://www.msworld.org/forum/showth...an-(Rituximab)

                    Wishing you wellness!
                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #25
                      I heard today that for those diagnosed, 80% are asymptomatic. I take some comfort in that as well.

                      This epidemic is still evolving as is data regarding it and practices to deal with it.

                      So far, data in the US is very limited, especially with the very, very, very limited testing which has occurred thus far in the US. If 80% are asymptomatic with COVID-19 then to me, that means this virus will be spread by those who are moving about daily life. Therefore, eventually, and relatively quickly, a great many people will be exposed.

                      If the death rate is around .7%, as some have indicated and half of the population of the US is exposed then over one million people in the US would die from this virus.

                      A January 29 stat from China indicated, "1370 severe cases out of 7417 patients still alive, so about 18% of cases were classified as severe at the time." Severe meaning required medical treatment including hospitalization.

                      So, if about 80% are walking around asymptomatic spreading the disease, about 18% require various degrees of medical treatment, and .7% die, I think it is something entirely new in the modern era.

                      The painfully slow government response in handling the outbreak and educating the public is unconscionable. The President said on February 25 the coronavirus was quote, "under control" and "We're really down to probably about 10 [cases]." End Quote.

                      Health is a national security issue, IMO. The silly nonsense of pretending COVID-19 could be gone by April works only in a child's world of make-believe; as is the juvenile nonsense of believing a vaccine will be developed in weeks.

                      Grown-ups have to deal with reality. And, the reality is this is an epidemic and it is still evolving.

                      It is helpful that the government is FINALLY recognizing that and responding. Unfortunately, the powers that be were asleep at the wheel virtually the entire month of February when we should have been much, much, much more engaged.

                      The wisdom of initially not testing people and hoping COVID-19 would go away seems not to have been a great strategy. As of yesterday, only about 500 people had been tested, some of them several times. So the government could say that 1500 tests had been done by yesterday. Think of it... South Korea has been testing hundreds of thousands and we tested 500!

                      Our national response has been TOTALLY irresponsible!

                      Reality is forcing us to face facts and deal with something we would rather not but must.

                      Comment


                        #26
                        Originally posted by Brad1138 View Post
                        I understand Dr. Faucci knows something about infectious diseases including Caronavirius:


                        https://www.nejm.org/doi/pdf/10.1056...icleTools=true

                        Death rate similar to Severe seasonal flu. No panic, just caution.
                        It does not appear Dr. Faucci stated coronavirus has a death rate similar to seasonal flu, he said it MAY have a similar death rate. There are a great many unknowns, as acknowledged by Dr. Faucci dealing with a new virus which first appeared in humans only two months ago.

                        Here is what he said, Quote, "This suggests that the overall clinical consequences of Covid-19 may ultimately be more akin to those of a severe seasonal influenza
                        (which has a case fatality rate of approximately 0.1%)" End Quote

                        For the moment, I agree that it seems likely that we have no better option than to conduct life as though COVID-19 is a severe seasonal flu. Containing asymptomatic spread will be extremely challenging and is likely, IMO, to already have been spreading so that genie is out of the bottle with no easy way of putting it back.

                        For MSers, each will make decisions based on their individual situation. For informational purposes here is what Italian neuros in a region hit hard by coronavirus outbreak are suggesting...

                        Italian recommendations on the management of MS patients during the COVID-19 epidemics

                        These are recommendations made by Neurologists and Infectious diseases specialists whilst we have no evidence-based data at present.

                        Treatment of MS patients

                        Given the lack of knowledge or data on the COVID-19 disease course in MS patients receiving DMTs, at present there is no recommendation to stop the different DMTs and therefore expose MS patients to the risk of MS exacerbations. We, therefore, recommend continuing the current DMT specifically with:
                        1. First-line DMTs (Beta-interferons, Glatiramer acetate, Teriflunomide or Dimethyl fumarate). These DMTs can be prescribed as usual.
                        2. Fingolimod.
                        3. Natalizumab.

                        For ‘lymphodepleting’ DMTs: Any decisions about these DMTS should be made based on individual circumstances.

                        Temporarily delay the start of lymphodepleting DMTs such as Ocrelizumab, Alemtuzumab, Rituximab or Cladribine.

                        Temporarily delay (between 6 and 12 months depending on the DMT) re-dosing of Alemtuzumab, Ocrelizumab and Cladribine. This decision should be made based on individual factors such as disease severity and disease activity.

                        For anti-CD2O DMTs it is recommended to delay next dose even beyond 6 months if CD19+ and CD20+ lymphocyte counts are severely decreased at the time the next dose is due.

                        Some special considerations: for patients who have already received the first dose of the first cycle, it is recommended to give the second dose (i.e. complete the first cycle) and ‘extra precautions’ should be taken.

                        Patients with confirmed COVID-19 infection:

                        Withhold any first or second-line DMT until clinical resolution and/or approval to continue treatment by an infectious diseases specialist (given the potential antiviral activity of beta-interferons documented in the literature, for patients receiving treatment with beta-interferons the decision about continuing treatment resides on the treating neurologist).

                        Symptoms of potential COVID-19 infection: fever, dry cough and asthenia.

                        What to do in the event of COVID-19 symptoms?

                        Instruct your patients no to attend A&E services to avoid overcrowding them and further spreading of the virus. Instruct your patients to call the local emergency number, describe their symptoms and wait for instructions.

                        Evaluate the temporary withdrawal of current DMT based on the guideline provided above.

                        Recommendations for MS patients and healthcare professionals at MS centres:

                        If possible, avoid crowded places such as cinemas, theatres, schools, etc.

                        In high risk, areas restrict access to MS centres to MS patients only.
                        For patients on immunosuppressive infusion therapies, the use of protective surgical-grade masks is recommended.

                        If travelling long distances or using public transport is absolutely necessary, it is recommended the use of protective masks and hand sanitizing (particularly for patients on Fingolimod, Alemtuzumab, Ocrelizumab, Cladribine or Rituximab).

                        If possible, work from home.

                        Good personal hygiene is always important, specifically, it is recommended to wash your hands frequently. These recommendations are provided as a guideline only, please always refer to your local government advice.

                        These recommendations are likely to change depending on the evolution of the epidemics.

                        Comment


                          #27
                          Thank you Seasha for letting me know that. I’ve learned something already today!
                          It was one agains't 2.5million toughest one we ever fought.

                          Comment


                            #28
                            The US government agencies CDC, NIH, HHS, FDA are working very hard on the COVID-19 situation.

                            They are coordinating and sharing info with the best health experts worldwide, with our state and local agencies, with transportation, health care facilities, and private sector business.

                            There have been daily briefings with updates on the situation. More testing kits are being manufactured and distributed.

                            You can get more info by going to the websites of the agencies mentioned above.

                            Take Care
                            Last edited by KoKo; 03-05-2020, 11:49 AM.
                            PPMS for 26 years (dx 1998)
                            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                            Comment


                              #29
                              Originally posted by KoKo View Post
                              The US government agencies CDC, NIH, HHS, FDA are working very hard on the COVID-19 situation.

                              They are coordinating and sharing info with the best health experts worldwide, with our state and local agencies, with transportation, health care facilities, and private sector business.

                              There have been daily briefings with updates on the situation. More testing kits are being manufactured and distributed.

                              You can get more info by going to the websites of the agencies mentioned above.

                              Take Care
                              For whatever odd reason I can only post in this thread by hitting "reply with quote", nothing else works. Thankfully, that option does.

                              Yes, our government is now responding. The month of happy talk in February is finally over; it did nothing to contain COVID-19.

                              Other countries have been far more aggressive much earlier than the US in measures taken and information disseminated.

                              It is interesting that in the US insurance companies such as Kaiser are establishing MS treatment protocols versus Italy where neurologists are doing that job. The bottom line for insurance companies is profitability, for neurologists the bottom line is health of their patients, IMO, so for me, I lean toward the neurologists' protocols. They simply know more about health aspects than insurance companies.

                              For example, Kaiser apparently believes Gilenya and Tysabri patients should consider halting those treatments in response to COVID -19 but the Italian neuros think the opposite, according to their published guidelines. Why is that? We don't know, however, one explanation could be that the Italian neuros are more concerned about MS rebound with those Gilyena and Tysabri. Rebound is commonly treated with steroids which weaken the immune system even more. But all that is speculation. My point is that I personally lean toward what MS neurologists say rather than insurance companies. But to each his own.

                              Also, the Italian neuros favor halting Ocrevus in an area of COVID-19 outbreak. I'll pass on commenting about that since the explanation is nuanced, complex and also seems to discomfort some not of that opinion.

                              I started this thread to encourage PwMS to begin thinking about what measures they might take should COVID-19 spread to their area. My guess is that each MS center is in the process of developing guidelines in case COVID-19 becomes a problem in their area. How much of that protocol will be established by insurance and governmental agencies is unknown at this point.

                              But separate from that is the question of what we do in our own homes and daily lives. We must not panic. The need is to continue learning, keep abreast of daily news to inform us of changes and facts as they dribble out.

                              IMO, this virus presents concern because it is mild in most people but seems deadly to many of the most vulnerable.

                              When this crisis has passed, as I am hopeful it will in about one year, I personally don't believe the death rate will prove to be the 3.4% reported today by the WHO. The death rate may be 3.4% of those requiring hospitalizations (18% of Chinese with COVID-19 required medical treatment including hospitalizations) but that is still a huge number, JMHO.

                              In any case this epidemic is still evolving, it is prudent to stay abreast as best we can and adjust if we must.

                              Comment


                                #30
                                I hope people watched the live broadcast of doctors from Johns-Hopkins today on C-span this afternoon. It was very informative. Their website on COVID-19 is updated every 15 minutes so they are often ahead of what is reported by the CDC and considerably ahead of the administration's daily briefings.

                                Here are some of the facts presented during the J-H doctors' live broadcast this afternoon...

                                The fatality rate in China from COVID-19 is 4.3%, in Italy it is 3.2%, and in South Korea it is .6%. The doctors attribute South Korea's low number to the fact that they are giving the test to large numbers of people, in fact, to ANYONE in South Korea who requests testing. Earlier this week the US administration promised 1 million tests would be available by the end of the week but that figure turned out to be more happy talk. Until widespread testing is conducted in the US we remain in the dark about how widespread this disease is in the US.

                                Some facts presented today by J-H doctors on C-span...

                                In China, about 20% of those with COVID -19 have NO symptoms.

                                80 to 85 percent suffer little effect from the virus; needing care ranging from some care to none.

                                760 million Chinese were confined to their homes. Yes, 760 million. Good luck with that kind of containment in the US. Here, people defiantly state they are going to large gatherings. Why? Perhaps, because they continue believing the administration's happy talk.

                                In China, about 15% of those tested for COVID-19 were hospitalized.

                                In China, 5% required critical care including ventilators.

                                These are some of the facts presented today by doctors from Johns-Hopkins.

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