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  • #31
    Fingolimod discontinuation caution warning

    A peer review article has been published detailing that a 57 yr old man with MS, contracted covid and for 3 wks had occasional fever and no respiratory symptoms.. But when he discontinued his DMD Fingolimod because his lymphocytes got too low, he had a severe increase in covid symtoms with signs of hyperinflamation syndrome in lungs. He was given methylprednisolone (80md/day for 1 week) and thankfully significantly improved and recovered. Although this is one individual, many neurologists are now advising that discontinuation of Fingolimod when a patient has covid should be closely watched.

    Article on case study

    Barts Blog Post on this issue https://multiple-sclerosis-research....and-mscovid19/

    Beth Isreal Deconess in Boston, MA tweet to watch patients who are discontinuing fingolimod closely.

    Last edited by Suebee; 07-15-2020, 01:11 PM. Reason: Fix link


    • #32
      Important to understand DMD mechanism of action

      Just what you all might like, a picture book on MS and Covid! Well, not entirely. This article gives detailed explanation about how each DMD for MS works and pros and cons during pandemic. each drug is discussed separately, so if you are seeking more in-depth info about your drug or benefits of switching DMD, this could be a helpful resource. Bonus, It does have good color illustrations for better understanding of this content. Note, because it was published 2 months ago, it doesnít give clinical data observed in hospitals past 2 months.

      Stated goal of article: in order ď
      to understand the risks posed to people with MS using DMT, it is crucial to understand the mechanisms of action, the impact of the treatments on infection-risk, vaccination responses and the mechanisms of pathology and immunity to [ Covid.

      Prof G is one of authors but i donít think I posted about it in this threAd.
      Link article: Baker, D. Et al.
      , The underpinning biology relating to multiple sclerosis disease modifying treatments during the COVID-19 pandemic

      Stay strong. Stay well my friends, Suebee


      • #33
        Warning - Increase rise of MSers with Covid19 in US! This is hard, but I think “pandemic fatigue” and confusing messaging has caused complacency. MSers, on DMDs especially, need to stay vigilant. On Wednesday,
        Neurolgist Dr. Barry Singer in MO. Warns of much greater increase of Covid Among MSers, especially older non ambulatory
        Last edited by Suebee; 11-06-2020, 12:53 PM.


        • #34
          Don't shoot the messenger .... my college daughter recently asked me about whether she should quarinteen and be tested before or after she comes homes for thanksgiving and even if she should stay at college. Gasp, I think I was in denial about risk, Covid cases are high on her campus, like many others, as well as in my community. I have low B Cells because of ocrevous, But my baby not coming home??? The best article I found about this was from Washington post

          This is clearly a personal and emotional decision, but one needs to be fully informed about risks and options. In sum, children returning home from college need to have a plan to keep exposure risk low to themselves and family members. As painful as it is to acknowledge this risk and need to take protective measures, my family is working out details to welcome my daughter home this holiday. No surprise this will involve mask wearing, isolation/ social distancing, testing, and maybe eating on patio (possible in Houston area in nov). I’d love to hear your suggestions and tips how you all are addressing thanksgiving at your households. Stay strong. This will come to an end. And Be safe my friends, Suebee


          • #35
            Hey Suebee, I've got one OTW to the house right now. She will have traveled by air for about 16 hours including layovers in airports. She is renting a car at the airport as opposed to our picking her up and she will be staying at an Air B&B as opposed to staying with us. She is coming over from the airport but will shower and change as soon as she gets here. And that's as safe as I can figure to make it. She'll only be here for 5 days so quarentining and testing are useless. Unless she was infectious before she left it's unlikely she will become infectious before she leaves again even if she did experience sufficient exposure to infect her. Obviously there is risk but I believe we've minimized it as much as possible and as you say, not seeing my kids is not an option.

            In two weeks I'll have a daughter and family coming in for 3 days. We will follow the same proceedures. And a week after that, my son and wife arrive for a week. Same deal.

            I also have a grand son coming back from college who will be staying with us. Fortunately he is not coming from a high Covid school or area. This one's a greater concern though as he will be here for 2 months and will no doubt be socially active. Not quite sure how we'll handle this one yet but I anticipate it will involve some of the above plus modified quarentining and posibly testing.

            See anything obvious that I missed?

            Good luck to all,


            • #36
              Larry, sounds like you have a great plan and it will mitigate exposure. This is a marathon and I’m convinced we need do our best to mitigate and have peace with whatever is right for ones family. Per some article suggestion in March, We assigned bathrooms to limit exposure there. There is suspicion that there is a fecal transmission route . We don’t share hand towels and we wipe down faucets, door handles, light switches often.
              We switched to plastic cups and write name on cup. This prevents drinking from someone else’s dirty glass. I mostly use separate paper plates instead of communal serving dish. We change ac filters more often, wipe down car interior surfaces before use and after, carry hand sanitizer and neurotically use it after activity, use disposable food prep gloves when pumping gas, and we temporally wear mask inside home for a few days if we found ourself in situation where there was high probability of exposure. We close bedroom doors if inside. There is study that family members reduce transmission from infected member if wear masks inside. And we regretfully don’t eat inside restaurants as this seems to be a noted risk factor. Unfortunately, mask wearing is not enforced here and risky situations arise. TX just hit a 1 million cases milestone. I send virtual hugs to you all, and hope you are all able to celebrate and enjoy Thanksgiving with your families safely.


              • #37
                Looks like we should all get an oppty to get the Covid vaccine within the next few months no matter which State! Been a long year for sure. I’m ready now for the vaccine. I feel very comfortable about the safety of the mRNA vaccines for immune compromised. For The Johnson &johnson I’m waiting to see what The MS society’s advice is on the vaccine for use in MSers. Here is a cut to chase easy to understand Vaccination Decision Guide for MSers (detailing DMTs) by Prof. G at Barts. Start getting geared up.....