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    • #19308
      Tom A
      Participant

      Hello everyone. Should we be concerned about immunosuppressive drugs and Corona Virus? I think so. I think at least we should think about it and ask questions. There is an interesting and well informed blog from Britain that outlines some well thought thinking on this topic by an expert. I have included the link (somewhere here). There are several good points of discussion also (including mine). I checked on this website (MS News Today) but didn’t see any discussion yet, but I bet there are people out there like myself who are wondering how Corona might impact them.

      I am supposed to go for my first annual (full) Ocrevus infusion next week. But Ocrevus seriously impacts immune function, and now, at a time when we might need that immune function the most. According to a recent news report I heard last night, five percent of Corona infections are very serious and involve compromised immune systems. Ocrevus compromises your immune system in order to make it less prone to attack your nervous system. You are most comprised immediately after you are infused, and that fades over the months. “So what should I do”, I thought.

      I finally got through to my MS expert Doctor and asked him. He believes that the track record with viruses and Ocrevus is good, meaning not many people have experienced new virus infections. He thought the risk of negative consequence was higher for suffering something MS related if one were not on a DMT.

      I disagree.

      I instead think it is a good idea to wait a few months, as we don’t know where the Corona virus is headed. I believe that it is a matter of when, not if, I will come in contact with Corona. Should I be taking a full infusion of Ocrevus at the exact same time as a new potentially deadly virus has begun circulating in the population? I think not.

      The author of the article cited (see link) would also disagree with me. But he does explain some good fundamental information about DMTs and the Corona virus and which DMTs present concerns, including Ocrevus.

      I prefer not to be the “poster child” for a bad outcome of a “perfect storm” involving Ocrevus and Corona. I can postpone my infusion (I hope), until we all see where this thing is headed. Better safe than sorry. There are and will be plenty of MSr’s on Ocrevus who get or got a recent infusion. You can’t undo it once its done. My MS was not so active that a few months of watching and listening without treatment will hurt me.

      Anyone have any thoughts?

       

    • #19309
      Ed Tobias
      Keymaster

      Hi Tom,

      The points you raise are excellent. I’m on Lemtrada and am protecting myself just as I would against standard influenza…hand washing, avoiding sick people, etc. Here in the U.S., through the first 7 weeks of flu season, 29 MILLION people have been treated for the flu, 280,000 have been hospitalized and there have been 16,000 flu-related deaths. Hard to believe, but those numbers come directly from the US Centers for Disease Control.

      I’ve reached out to the Consortium of MS Centers to ask if they’ve provided me with any info, yet. Below is the most comprehensive and logical advice that I’ve read about the COVID-19 coronavirus. It was shared with me by a Facebook friend.

      Also, here’s a link to a post on the BARTS MS blog which directly addresses your question about DMTs. https://multiple-sclerosis-research.org/2020/03/covid-19-and-dmts/

      Ed

      This from a pathologist in San Diego:

      Subject: What I am doing for the upcoming COVID-19 (coronavirus) pandemic

      Dear Colleagues, as some of you may recall, when I was a professor of pathology at the University of California San Diego, I was one of the first molecular virologists in the world to work on coronaviruses (the 1970s). I was the first to demonstrate the number of genes the virus contained. Since then, I have kept up with the coronavirus field and its multiple clinical transfers into the human population (e.g., SARS, MERS), from different animal sources. The current projections for its expansion in the US are only probable, due to continued insufficient worldwide data, but it is most likely to be widespread in the US by mid to late March and April.

      Here is what I have done and the precautions that I take and will take. These are the same precautions I currently use during our influenza seasons, except for the mask and gloves.:
      1) NO HANDSHAKING! Use a fist bump, slight bow, elbow bump, etc.
      2) Use ONLY your knuckle to touch light switches. elevator buttons, etc.. Lift the gasoline dispenser with a paper towel or use a disposable glove.
      3) Open doors with your closed fist or hip – do not grasp the handle with your hand, unless there is no other way to open the door. Especially important on bathroom and post office/commercial doors.
      4) Use disinfectant wipes at the stores when they are available, including wiping the handle and child seat in grocery carts.
      5) Wash your hands with soap for 10-20 seconds and/or use a greater than 60% alcohol-based hand sanitizer whenever you return home from ANY activity that involves locations where other people have been.
      6) Keep a bottle of sanitizer available at each of your home’s entrances. AND in your car for use after getting gas or touching other contaminated objects when you can’t immediately wash your hands.
      7) If possible, cough or sneeze into a disposable tissue and discard. Use your elbow only if you have to. The clothing on your elbow will contain infectious virus that can be passed on for up to a week or more!

      What I have stocked in preparation for the pandemic spread to the US:

      1) Latex or nitrile latex disposable gloves for use when going shopping, using the gasoline pump, and all other outside activity when you come in contact with contaminated areas.

      Note: This virus is spread in large droplets by coughing and sneezing. This means that the air will not infect you! BUT all the surfaces where these droplets land are infectious for about a week on average – everything that is associated with infected people will be contaminated and potentially infectious. The virus is on surfaces and you will not be infected unless your unprotected face is directly coughed or sneezed upon. This virus only has cell receptors for lung cells (it only infects your lungs) The only way for the virus to infect you is through your nose or mouth via your hands or an infected cough or sneeze onto or into your nose or mouth.

      2) Stock up now with disposable surgical masks and use them to prevent you from touching your nose and/or mouth (We touch our nose/mouth 90X/day without knowing it!). This is the only way this virus can infect you – it is lung-specific. The mask will not prevent the virus in a direct sneeze from getting into your nose or mouth – it is only to keep you from touching your nose or mouth.

      3) Stock up now with hand sanitizers and latex/nitrile gloves (get the appropriate sizes for your family). The hand sanitizers must be alcohol-based and greater than 60% alcohol to be effective.

      4) Stock up now with zinc lozenges. These lozenges have been proven to be effective in blocking coronavi

      rus (and most other viruses) from multiplying in your throat and nasopharynx. Use as directed several times each day when you begin to feel ANY “cold-like” symptoms beginning. It is best to lie down and let the lozenge dissolve in the back of your throat and nasopharynx. Cold-Eeze lozenges is one brand available, but there are other brands available.

      Good luck to all of us!

      James Robb, MD FCAP

    • #19312
      John Connor
      Keymaster

      Hi Tom

      Absolutely agree.

      I’ve had Lemtrada and now on Ocrevus!

      Indeed my immune system so compromised that my neurologist cancelled my Ocrevus infusion at the last min in Dec as the risks of PML too high!

      My column this week will be all about what we/I face.

      Thanks to you and Ed now won’t have to do much [or any] research.

      Any jokes tho will be original!

       

       

       

      • This reply was modified 2 years, 9 months ago by John Connor.
    • #19314
      Tom A
      Participant

      Hello again everyone. Ed Tobias gives a link with great info on this topic for everyone on a DMT. Each DMT has a different level of concern as they work differently to the same end. The link that I tried to post above, is at the same web location as Ed’s post, is written a few days earlier, and is also thoughtful as are the reader responses:

      Pandemic

      I have signed up by email to their posting notifications, and new posts are coming to me regarding this subject, several a day, by knowledgeable people. If this is a topic of concern to you, it appears that this is the place to go, at least for the time being: https://multiple-sclerosis-research.org  When you get there, search for COVID-19 and CORONA or other terms you think of. I am relieved that there is a place I can now go to get good information about my concern.

      Keep in mind the difference between good scientific data and second hand information. Everything I’ve talked about is now “second hand” and you have to look it up yourself to be sure for yourself. Specific to my situation, with a scheduled full Ocrevus infusion plus the factors I have pointed to in my initial post above, the following info has further contributed to my final decision to POSTPONE my Ocrevus infusion:

      • Knowledgeable Italian authorities (where Corona is widespread), have suspended Ocrevus infusions for most people.
      • My belief that the virus has a good chance of becoming widespread where I live.
      • People over age 60 (like me) are said to be at higher risk for severe infection of Corona regardless of their immune function.
      • My wife works in a well populated environment; increasing my odds of contact with the virus no matter how diligent I am in public.
      • Ocrevus treatment continues to “blunt” your immune function from months, to years, after you stop using it and your next infusion date has passed (without new infusion).
      • Estimates for the death rate of infected people are increasing, up to 3.5% (ABC News)

      So that’s enough for me. Decision made.

      (I have better things to do than post on blogs and do this only as a matter of personal responsibility to finish what I started and share what I know if it is important to others, and I think this is.)

      Good day and good luck

       

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