Have You Tested Positive for Coronavirus with MS?

Have You Tested Positive for Coronavirus with MS?
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What happens if you have MS and you’ve tested positive for COVID-19? How will the disease affect your disease-modifying therapies and your MS?

Dr. Barry Singer, (@drbarrysinger), a neurologist who directs The MS Center for Innovations in Care in St. Louis, has posed that question to his Twitter followers. Singer learned that some people with MS have been sickened by COVID-19, and the experiences they’re reporting from around the world seem encouraging. Here’s some of what they are saying on Twitter:

‘Flu-like symptoms but doing well’

Giovanna Borriello (@GiovannaBorri19): “In Rome we have one male patient positive to Coronavirus. Treated with Natalizumab (14 infusions done), actually just fever, under observation but not hospitalized. One positive female on DMF hospitalized due to fever and dyspnoea, good recovery in few days.”

AnnekeVdWalt (@anneke_vdw): “Case of person with COVID19 on ocrelizumab in Australia reported today. Mild infection and doing well.”

Elisabeth G. Celius (@CeliusElisabeth): “One patient with infection shortly after w1 in year 2 of Cladribine. Similar symptoms as others otherwise healthy so far.”

NeuroImmunology Club (@NeuroImmunology): “Have one patient with ocrelizumab infected. Doing fine. Flu-like symptoms but doing well.”

Susana Sainz de la Maza (@S_SainzdelaMaza): “I have one 40yo women recently diagnosed with RRMS (had not yet received DMT). High fever, dry cough and shortness of breath due to bilateral neumonia. Grade 4 lymphopenia and elevated C-reactive protein in the blood. Treatment with Kaletra and Dolquine has been initiated.”

Pablo Nieto (@IlNeuroDoktorMS): “I have one. Bilateral neumonia. 68 yo without treatment since 2 years (previously with Rebif). Discharged well last week after 2 weeks of hospitalization. No need ICU.”

AnnekeVdWalt (@anneke_vdw) “Case of COVID-19 in patient on Gilenya. Presented cough, fever 38.3. Spontaneously improved after 3 days and today (4th) day almost back to normal. Last lymphocyte count 0.5. We can’t make any conclusions for from a few cases but grateful for some good news.”

Encouraging news

This seems to be good news, especially regarding the patients being treated with Tysabri (natalizumab) and Ocrevus (ocrelizumab), both of which affect the immune system. There have been concerns that people being treated with these and other disease-modifying therapies might be extra-susceptible to infection. These informal responses indicate this might not be the case.

You might be able to help

Singer would like to hear from more people with MS who have tested positive for the coronavirus, or from their neurologists, via Twitter using the hashtag #MSCOVID19. He says it’s “important that we share global experience to give advice and make key treatment decisions.”

Singer is right, and I encourage you to participate. Knowledge is power. Currently, some of us have a lot of knowledge that can provide powerful help to those making treatment decisions.

You can find current information about MS and the coronavirus at our MS New Today Forums. You’re also invited to follow my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

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17 comments

  1. Logan s. says:

    This is the most encouraging article i have read in a long time. It is great to hear that people are doing good with covid19 while on dmt’s. I have been on tysabri for two years, definitely been very paranoid the last couple of weeks. Stay safe and wash your hands!

    Logan

    • Ed Tobias says:

      Thanks you, Logan.

      I’m hunkering down doing a lot of hand washing, but I’m also trying to get outside a few times a day. I was treated with Tysabri for seven years and it worked pretty well for me. It works by blocking certain immune cells from passing from the blood into the central nervous system. Ocrevus and Lemtrada, on the other hand, knock out certain immune cells for a period of time. So, in my opinion as a person with MS – not a scientist or health care professional – I think you’re at less risk with Tysabri than with some other DMTs.

      Ed

  2. Ruth Hoham says:

    I’m counting on “herd immunity” to do the job of reducing new infections. I think I may be experiencing fever and fatigue, and am isolating myself. Am not on DMT.

    We’ll see….

    • Vivian M. Callender says:

      Is your fever constant? How high? For the past few weeks, have been spiking a temperature between 100-101 then goes back down to MY normal of 97. Started my FOURTH DMT this past September of a PILL, Aubagio 7mg. So far so good. This DMT can be used for RRMS but also for Secondary Progressive which is where I am now. My health care team advised that I get out in the fresh air and take a deep breath, if I can exhale without coughing or becoming winded, then means lungs are in decent shape. Try this, might help you determine that you should call your PCP or Neurologist because the only way to get the COVID-19 test is with a script from your physician or specialist. Feel better!

  3. VALENCIA says:

    I am on plegridy and I have been doing as much as I can to decrease my risk. Every person is different, but this is good to see.

  4. Stacy Boo says:

    Oh my this has been a relief for me, naturally I was thinking if caught there wasn’t any way out of the Covid19 germs, but surely there is hope🙏🏾🙏🏾🙏🏾 I’m a worrier with Anxiety 🙁 Ocrevus twice yearly. Thank y’all for sharing a true Gem of hope😁

    • Thank you for sharing. I started my first dose of Ocrevus 2019, been at home for 4 days self isolation with COVID19 symptoms. Using nebulizer for breathing treatments. 3 am this morning I had a seizure which resolved in about 20 minutes.
      I also have Trigeminal neuralgia. Pretty bad pain , no use of right side of face and right eye is super blurry.
      Seems like virus symptoms started Flare up, and it’s the worst it’s ever been. In bed, trying to relax, but so much on my mind.

  5. Tom says:

    I didn’t see anyone that was on Avonex mentioned. The closest was the 68 yo rebif patient, but it sounded like he has not taken his medication for 2 years.

    • Ed Tobias says:

      Tom,

      I haven’t seen any information about Avonex but I’m keeping an eye open and will write an updated column when there’s more info from the various databases that are currently collecting information.

      Ed

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