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  • #16
    Promising News: No reports of mortality in immunosuppressed

    A few days ago An Italian doctor, Dr Lorenzo D’Antiga, published a peer reviewed article which states covid-19 to date has not shown severe disease in immune suppressed individuals and that this is consistent with past corona viruses. This should give some relief to your anxiety even though it’s early in this health crisis. I pray it is true.
    Dr. D’Antiga writes,
    “Unlike common viral agents (such as Adenovirus, Rhinovirus, Norovirus, Influenza, Respiratory Syncytial Virus), Coronaviruses have not shown to cause a more severe disease in immunosuppressed patients. For this family of viruses the host innate immune response appears the main driver of lung tissue damage during infection.
    More importantly, reviewing the mortality and morbidity reports published on Coronaviruses outbreaks such as Severe Acute Respiratory Syndrome (SARS) that emerged in 2002, Middle East Respiratory Syndrome (MERS, still ongoing) and more recently COVID-19, no fatality was reported in patients undergoing transplantation, chemotherapy or other immunosuppressive treatments, at any age. Risk factors for poor outcome include advanced age, male sex and presence of comorbidities (obesity, diabetes, heart disease.”

    Cite/Link to article :
    (To view click “About” left side and select “PDF”)

    I hope you are all doing ok under these extraordinary circumstances. My area has recently become a cluster, causing localized concerns that the local food chain might be temporarily disrupted, not from lack of products but lack of staffing. Good idea to Stock up on food /medicine you need for a week or two as a safeguard. Stay safe, Suebee
    P.S. Thanks Larry, I appreciate you all. This forum has been a bright light during some of my darkest times. I am grateful to belong to this community, and happy my contributions might be of use to it.
    Last edited by Suebee; 03-28-2020, 01:06 AM.


    • #17
      Thank you Suebee, I check back regularly to see if there's anything new. Please be safe!


      • #18
        MS Prof G explains safe level lymphocytes

        If you are on DMT and consulting with your neurologist about continuing or postponing, Dr. G from U.K. explains in today’s post:

        “I know that a lot of you are confused because some neurologists are saying you at high risk of severe COVID-19 if your [absolute lymphocyte Count] ALC is less than 1000/mm3, others like me are saying that you are only at increased risk if your counts are less than 800/mm3 and still others who are saying that you should only worry if your ALC is less than 500/mm3.

        Apologies, about the confusion, but as with most things in medicine nothing is black and white; it is a soft call and advice also needs to be pragmatic and generalisable to the wider MS population. “

        Prof G gives a more detailed explanation for those of you seeking a longer analysis with specific examples at his blog post here. https://multiple-sclerosis-research....phocyte-count/

        From across the pond, I shout out a Thank you to Prof G for using his valuable time to help us all make informed decisions with our own drs with current available information about DMTs during this crazy time. His cogent posts give no empty praise but much reassurance about what can be understood. Dr. Birx please copy.



        • #19
          So much information is rolling in on COVID-19. Member Mary sent me this interesting video link...

          Here is the link to the recording of an excellent webinar by Dr. Bowen at Swedish Medical Center in MS in Seattle. I encourage to view it. The first part is about the virus itself and the second part discusses the MS implications. Questions and Answers are last. Some people have had trouble viewing it. If they get the picture but no sound, fast forward to about 12 minutes into the presentation and it will start. The presenters were waiting for a few minutes for everyone to sign in.

          Dave Bexfield


          • #20
            Cautiously Optimistic Data Ms DMTs/ Covid19

            Hi All, I hope you are well and safe at home. This past week, I’ve been watching anxiously for more data on Covid19 outcomes from Europe and UK that use similar DMTs for MS as is used in the States. The progression of Covid19 appears to significantly worsen after day 10 or so of illness, and for that reason areas with earlier outbreaks have been giving out initial data on MS/ Covid19 outcomes. I’m glad to report that Dr. G at Barts in London calls this data hopeful and “information that will allow pwMS on immunosuppression to sleep a bit easier.”

            Specifically, Dr. G posted today, “ The hypothesis that immunosuppression may protect you from severe COVID-19 is gaining traction. New data released on the 4th April 2020 from the UK’s Intensive Care National Audit & Research Centre suggests it may. When comparing 2249 patients admitted to ITU in the UK with severe COVID-19 the proportion of immunocompromised patients was 3.7x lower than the proportion of immunocompromised patients admitted to ITU with viral pneumonia (the comparator) between 2017 and 2019 (2.3% vs. 8.5%). This was a highly significant difference (p<0.00001).”

            Dr. G’s full post link is here: https://multiple-sclerosis-research....vere-covid-19/

            Stay safe everyone. Virtual hugs. Suebee


            • #21
              Latest neuro view

              In Mult Scler Relat Disord. 2020. doi: 10.1016/j.msard.2020.102073, The COVID-19 pandemic and the use of MS disease-modifying therapies, Gavin Giovannoni et al. Dr. G and multiple other neurologists published a commentary on MS treatment during pandemic. Their recommendations are meant as a guideline and seem consistent with his prior postings. My personal takeaway: 1) don't hold breath for vaccine - but do adequately treat your MS. The commentary explains, " Vaccines take time to be developed, tested and introduced at a population level. Delaying [MS DMT] treatment, de-escalating therapy by switching to immunomodulatory DMTs, such as interferon-beta, glatiramer acetate or teriflunomide, or interrupting dosing of DMTs to wait for a vaccine will delay the adequate treatment of MS, especially as it may take 12–18 months to develop a vaccine. We, therefore, need a pragmatic response on management of the potential threat of COVID-19 in individuals with MS.*"
              My Second takesway: each MS patient has a different risk profile. The commentary states,"It is essential to consider the potential risk of morbidity and possible mortality for each MS patient, who [may get] COVID-19. The individual's risk profile is multifactorial; their DMT and consequent immune response is one of the factors. Other aspects to consider... include: smoking practices (increased cigarette smoking increases risk); ambulatory status (less mobility increases risk, especially if the patient is in a wheelchair); age (increasing age increases risk); weight (increasing weight impacts on ambulation and respiratory function); underlying respiratory illnesses, such as asthma or COPD."
              Importantly, Dr. G also notes that other risk factors to weigh when managing DMTs are the frequency of a patient's visits to at a healthcare facility for labs, MRIs, or infusions, because of possible increase of exposure to virus.
              Link to full article here:

              Stay well my friends.


              • #22
                Consider buying pulse oximeter!

                Have you all noticed that some doctors have suggested that people consider buying a pulse oximeter as a personal home monitor in case you or your family contracts covid19? This is because covid19 can cause "silent hypoxia", insidious oxygen deprivation. A NY times article (cited below) states, "Pulse oximetry is no more complicated than using a thermometer. These small devices turn on with one button and are placed on a fingertip. In a few seconds, two numbers are displayed: oxygen saturation and pulse rate. Pulse oximeters are extremely reliable in detecting oxygenation problems and elevated heart rate." According to the NYTtimes, the reason the device is particularly helpful for managing Covid pneumonia is because unlike other types of pneumonia, covid pneumonia patients "don’t feel short of breath, even as their oxygen levels fall. And by the time they do, they have alarmingly low oxygen levels and moderate-to-severe pneumonia (as seen on chest X-rays). Normal oxygen saturation for most persons at sea level is 94 to 100 percent; Covid pneumonia patients [have been observed with] oxygen saturations as low as 50 percent." Similarly, a report by NPR (cited below) concurred, quoting another doctor's opinion that, "if you have symptoms consistent with the novel coronavirus, using a pulse oximeter*and*consulting with a doctor can be a good strategy." The NPR article did caution that a good oxygen saturation rate is only one piece of data, and to be aware of other symptoms of covid that may require medical attention such as severe dehydration or weakness.

                I didnt want to sound alarmist so I was hesitant to post earlier that my family bought a pulse oximeter several weeks ago on line.( Be sure it is FDA approved and from a reputable vendor). Even though many are on backorder, keep on lookout for availability. Our Houston area Local hospitals had explained awhile back that treatment for covid19 would be managed at ones home, and an ER visit should occur only upon recommendation of a dr and to a correct facility prepared for your arrival. Since my daughter has asthma and I have weak chest/ core muscles from MS, we figured an objective oxygen saturation number would be helpful to us determine if we needed hospital care. Once the device arrived in the mail, our immediate benefit was feeling amazingly reassured that we could objectively recognize if we needed immediate medical attention. It also helped some panic attacks that were triggered by high pollen allergy induced respiratory issues. Such crazy times that a grass pollen allergy can make -one feel terminal.
                Link to NYTimes article
                Link to NPR article

                Stay well. Stay safe. Please pardon typos/ spelling errors. Not my strong point.


                • #23
                  Thanks for all the updates, Suebee! The Gavin Giovannoni article is expanded here if folks want to read it.

                  Dave Bexfield


                  • #24
                    Interferon B as treatment for Covid19 ???

                    Prof. G at Bart’s in London explains for us lay people how interferon B might help treatment of Covid19.
                    He posted, “There is a question about whether interferon B can be used for the treatment of COVID-19. This is because interferons are anti-viral. However it is argued here that the dosing used in MS may not be high enough and that the high doses they suggest may cause side effects. ..[German scientists] are also talking about [using interferon B as a] treatment for severe COVID19. People with MS would be getting the benefit of prophylactic treatement. However, do people taking beta interferfon get COVID-19. The answer is yes. Do they recover? On the whole the answer is yes too, but that is the case for every one else on MS DMT unless you have the features associated with risk in the general population.”
                    Link to Prof G blog https://multiple-sclerosis-research....nst-mscovid19/

                    Link to German article in English
                    Last edited by Suebee; 06-01-2020, 01:30 PM. Reason: Link to article


                    • #25
                      Alemtuzumab patients get mild Covid!

                      Doctors in Spain find that Alemtuzumab appears safe to use as DMD during pandemic. It is a limited study and doesn't appear to address whether it increases chance of infection, but is reassuring. It states "Our data suggest that patients receiving alemtuzumab showed very mild symptoms of COVID-19. We speculate that immune reconstitution induced by treatment may induce positive changes in the immune system in the defense against SARS-CoV2. Further research about alemtuzumab and their role in COVID-infection is necessary to confirm these preliminary findings"
                      The article gives specific details about how it depletes B and T cells, as well as its use on more advanced cases of MS disease, and possible mechanism for why it might prevent severe covid disease. Link to article in english
                      Relish this bit of good news! I hope this gives some of you some peace of mind. Virtual hug,


                      • #26
                        ocrelizumab/ rituximab &amp; covid good news

                        I’ve been hesitant to post recent conflicting information about covid and ocrelizumab and rituximab because it is so conflicting and speculative. I am not a science person and do my best to synthesize info I read but I welcome any and all comments or corrections to anything I post. (Hint hint all you scientists reading....) but as you know, this “novel” virus has left everyone speculating about risks and ways to mitigate.

                        So Here is hot of the presses is good news to savor from doctors in Spain that anti-cd20 treatments (ocrelizumab/ rixuximab) are safe drugs in patients with multiple sclerosis infected with Covid.

                        COVID-19 IN 7 MULTIPLE SCLEROSIS PATIENTS IN TREATMENT WITH ANTI-CD20 THERAPIES, Multiple Sclerosis and Related Disorders (2020), DOI :

                        The article states “Even with differing clinical pictures, all presented favorable evolution, for which there are several hypotheses:
                        1. Patients treated with anti-CD20 may be capable of having a primary immune response in the initial phase of infection. Ocrelizumab and rituximab induce depletion of circulating CD20+ cells and not the B cells in secondary lymphoid organs, favoring an adequate immune response against primary infection.

                        2. B cells and immunoglobulin may not be absolutely necessary for viral elimination. Perhaps in some especially milder cases, innate immunity anti-viral T cells may be sufficient for recovery.

                        3. Several publications have suggested that selective immunosuppression prior to SARS-CoV-2 infection could benefit and even protect patients from its hyperinflammation phase, which is accompanied by a release of proinflammatory cytokines that can ultimately be fatal. It is hypothesized that the decrease in IL-6 releasing peripheral B cells could confer this protection to patients in the hyperinflammation phase.” (Footnotes omitted in this excerpt)”

                        Link to journal pre-proof article


                        • #27
                          Vaccine readiness and Orcevous

                          Alright, Dave mentioned this issue in his posts. I want to put my head in sand and skip over issue , but I think it’s important to understand what drs are observing and speculating ...

                          Fact - orcevous / rixitaub can inhibit ones B cell response, and, therefore, logically prevent an antibody response. This negatively impacts “vaccine readiness” but Drs also speculate it might prevent those who are exposed to Covid19 from building an antibody response that would offer immunity from reinfection.

                          Observation - Prof. G at Bart’s posted today about a woman with MS on orcevous who recovered from a Covid19 infection after 10 weeks and later tested negative for the antibody, twice. Prof. G makes it clear that it is unclear whether this is due to false negatives or truly a lack of antibodies. Whether the woman has immunity to virus can only be answered by time.
                          Link to Prof G’s blog post https://multiple-sclerosis-research....diness-part-2/

                          Oh gosh, This is so tough to hear that if I’m unlucky enough to get Covid19, there is a possibility that my DMD might prevent immunity, and I could actually get sick again on the next wave!!!
                          However, we really don’t have many options at this juncture. For that reason, I suggest we all focus on clear facts that we know for sure: a woman on orcevous recovered from Covid19 infection and did not require oxygen therapy. She tested negative for antibody. But There are no established facts at this time about whether or not she has acquired immunity to future infection.
                          Friends, Stay well, keep safe, stay strong. Suebee


                          • #28
                            Appears risk higher for anti-cd20 DMTs

                            My philosophy is that Meta data and top notch scientists are our best hope to understand MS and Covid19. I’m sad to relay that very current thinking at this time is that anti-CD20 therapies increases your chance of getting COVID-19 and possibly severe COVID-19.

                            Prof G at Bart’s (my favorite smarty pants) explains, “This change [in thinkng] is based on data from the Swedish MS registry and the survey ...done in Iran. In short being on rituximab [and by extension orcevous] doubles your risk of getting COVID-19 and there is a suggestion that it increases your risk of getting severe COVID-19”.
                            Prof. G speculates it is because it prevents one from making immune protective antibodies to run of the mill corona cold viruses, which may offer protection from contracting symptomatic or severe Covid19.

                            But Before we all run from room, listen to Prof G’s pragmatic advice: “if you are already on an anti-CD20 therapy there is little you can do about your preexisting immunity to community-acquired coronaviruses; you either have immunity or you don’t. Similarly, you can’t simply reverse the action of anti-CD20 therapies it takes months to years to reconstitute your peripheral B-cell pool. This is why I am now recommending that if you are on an anti-CD20 therapy you be extra-vigilant when it comes to trying to avoid being exposed to SARS-CoV-2 (social isolation, personal hygiene and avoiding high-risk environments).”

                            Prof G further states, “ I am still not recommending shielding [UK term for staying inside at home with few exceptions* ] because even though there is about a doubling of the risk of getting severe COVID-19 (hospitalization) the affected people with MS have been making a good recovery. The main determinants of death from COVID-19 in people with MS are older age, advanced disease and comorbidities and not the DMT they are on.” Prof G notes the good news that the risk of acquiring Covid19 “in most countries”, which use anti-cd20 dmd, is low. (I guess that USA is higher risk than others at present )

                            Link to Prof G blog post quoted https://multiple-sclerosis-research....d20-backpedal/
                            Link to Prof G blog post related posted today https://multiple-sclerosis-research....make-a-summer/

                            * UK Govt explanation on “shielding” at risk people

                            Stay well and safe, Suebee [virtual hugs]


                            • #29
                              MS Int’l Federation Updated DMDs / Covid

                              On June 17th the MS int’l Federation updated its earlier recommendations on MS DMDs during Covid. Update has Encouraging news for interferons, Copaxone, dimemythal fumerate, siponoid, teriflumonide. It raises concern about anti-cd20 therapies and Makes no observations about the rest due to lack of data. ( Note that , Different countries have differing views and always consult with your neuro about your specific situation)
                              Here is excerpt:
                              “● Before starting on any new DMT, people with MS discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in the region. The following information should be considered during decision- making:
                              o Interferons and glatiramer acetate are unlikely to impact negatively on COVID-19
                              severity. There is some preliminary evidence that interferons may reduce the need for
                              hospitalisation due to COVID-19.
                              o The limited evidence available suggests that people with MS taking dimethyl fumarate,
                              teriflunomide, fingolimod and siponimod do not have an increased risk of more severe
                              COVID-19 symptoms or death.
                              o Therapies that target CD20 – ocrelizumab and rituximab – may be linked to an increased
                              chance of being admitted to hospital or requiring intensive care treatment due to COVID-
                              19. This preliminary finding requires further investigation.
                              o More data on the use of natalizumab, alemtuzumab and cladribine during the COVID-19
                              pandemic are required to make any assessment of their safety.
                              ● People with MS who are currently taking ocrelizumab, rituximab, ofatumumab or ublituximab
                              and are living in a community with a COVID-19 outbreak should be extra vigilant and may want to consider self-isolation to reduce their risk of infection.
                              ● People with MS who are currently taking alemtuzumab or cladribine and are living in a
                              community with a COVID-19 outbreak should discuss their current lymphocyte counts with their
                              healthcare professional. If their counts are considered to be low they should isolate as much as possible to reduce their risk.”

                              Link to MSIF PDF document highlighting June changes to DMD recommendations in yellow, May changes in green.



                              • #30
                                Vaccine readiness &amp; extending DMD dosing

                                Limited but promising info has been published about results of the ocrevous drug trial II extension, which suggests the ocrevous dosing schedule can be extended without relapse so long as at least 3 dose cycles have been administered. A dosing extension would make it possible to repopulate sufficient B cells to generate an immune protecting antibody response to a vaccine. It was noted it also would allow for a "drug free" pregnancy.
                                Link to article available for about 2 months
                                Link to dr G 's blog on these findings: