Columns Covid-19 Have You Tested Positive for Coronavirus with MS? Have You Tested Positive for Coronavirus with MS? by Ed Tobias | March 20, 2020 Share this article: Share article via email Copy article link 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 MS New Today. You’re also invited to follow my personal blog at www.themswire.com. *** 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. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags coronavirus, COVID-19, disease-modifying therapies (DMTs) Comments Logan s. 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 Reply Ed Tobias 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 Reply Diana Great new and significantly decreases my anxiety!!! Reply Ruth Hoham 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.... Reply Vivian M. Callender 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! Reply Ruth Hoham Thanks Vivian - I’m feeling better! Reply Angie Thanks so much for sharing these cases - a glimmer of hope for MS patients in these worrying times ? Reply Jeanette Iuzzolino Good news to hear. Very promising. Reply Gavin mccaffery Very good news for a change Reply VALENCIA 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. Reply Arielle Seeking info on someone with SPMS on Ocrevus and their risk of COVID 19, anyone encounter this? Thanks. Reply Ed Tobias Arielle, I included two reports of people using Ocrevus who were said to be doing well. You should be able to find more info here: https://sites.google.com/giovannoni.net/clinicspeak-dmt/covid-19-ms Ed Reply Mary C. I searched “ocrevus and corona virus” and found many articles. It seems that Ocrevus can leave you more susceptible to upper respiratory infections. So far I’ve only come across positive news but it still makes me nervous. I’m retired so my plan is to stay in and stay safe. Reply Ed Tobias Hi Mary, The information about DMTs and coronavirus/COVID-19 seems to shift day by day as more info keeps popping up. My monitoring of it leaves me with the impression that, in general, there doesn't seem to be a relationship between DMT treatment and either being susceptible to the virus or its disease course if you get it. However, I've been avoiding contact with people for the past month and continue to do so...for my sake and for the sake of others. Ed Reply Stacy Boo 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? Reply Cassandra Yeatts 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. Reply Damian Thank you for sharing this information, which is very refreshing. Reply Tom 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. Reply Ed Tobias 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 Reply Mike How many MS patients have become infected? What were their therapies? I have taken Copaxone for more than 16 years. I almost never get sick. Since this therapy does not suppress the immune system, I wonder if my hyper-active immune system makes MS patients that rarely get sick candidates to incubate a vaccine. Reply Ed Tobias Hi Mike, You raise a good question but it seems too early to answer it. Not enough is yet known about this new coronavirus and COVID-19. I will say that I've seen others raise the same question and my neuro refers to MS as "supercharging" the immune system. I'm keeping an eye out for any scientific answers to your question that are published. Ed Reply Holly Bitner I am weeping while reading this article and comments. Retired after 41yrs. EEG tech/CRT. Diagnosed in 2003 with RRMS. I cautiously brag that I rarely get sick. Have been taking Tysabri for several years. This information gives me some optimism. I will continue to be compliant with all safety precautions and busily sew more masks for family and friend after our daily walk. Reply Ed Tobias Hi Holly, Thanks for your note and good luck for your Tysabri. I was treated with it for about seven years and was happy with it but I had to switch once my titer score became too high. Good for you for sewing masks. There isn't much that an average person can do to help, but that's one thing that's possible. I'm gathering info for an update of this column and hope to have it on the website shortly. So, keep an eye out for it. Ed Reply Amanda Garland Great to hear, for weeks I have been so stressed, MS, no meds for 11 yrs, encouraging to hear we are making it thru this! Thank you for article. Stay safe Reply Mark Lange My next Ocrevus infusion is due in early June, so I'm very happy to have found this discussion--feeling unsure as best way to proceed. I've heard that while we Ocrevus people may have increased susceptibility to infection, the immuno-suppressing actually could be beneficial if it ends up warding off the dreaded "cytokine storm" that can lead to complications/death. Interesting mixed bag! I'm am 57 and otherwise in very good health (mild hypertension the only other issue). My inclination at this moment is to get my infusion, and if indeed there's a COVID lull in the summer and resurgence in the fall--timing could be good, and then I'll rewiew again come the NEXT infusion. Thank you so much for opening this discussion! Reply Ed Tobias Hi Mark, You're spot-on with your assessment. I'm seeing the same mixed-bag regarding both DMTs and our MS. Is having MS, with an overactive immune system, a benefit or a disadvantage when fighting this virus? It's the same quandary as with the DMTs. All I can suggest is that you raise the issues with your neuro. Good luck with your timing plan. Ed Reply Mark Lange Hi Ed, and thanks--certainly will be discussing my neuro, Thursday. The other big question, I wonder, is will folks on Ocrevus be able to get the vaccine (at least a year away, I know)? Generally, I thought live-attenuated viruses were a no-go, but we shall see. Perhaps it'll also be an option to not get vaccine, but instead get immunoglobulin antibodies if infected (that's how I got out of having to get MMR recently) Anyhow, I get ahead of myself. I'm leaning towards going ahead with my next infusion and of course being super-safe! Mark Reply Ed Tobias Mark - At the beginning of this month it was reported that more than 100 vaccine development projects were in various stages. Only a few of them were investigating live-attenuated viruses which, as you say, are not advised for people with MS. https://www.nature.com/articles/d41573-020-00073-5 Ed Reply Samantha COVID 19 Positive as of April 24. Have had about 4 infusions of Ocrevus and my last one was pushed back to June from late April. Have a swollen tear duct from this morning, hasn't progressed. Do not have the "classical" symptoms of the virus. I'm ok but feeling crappy, almost like I'm relapsing but not. My MS symptoms are not necessarily effected but time will tell. I wish I knew how long I've been infected, what led me to get tested was on and off sore throat, on and off chills and body aches. Reply Ed Tobias Hi Samantha, Thanks for sharing your experience. It's useful to us all. I hope you recover as quickly as possible. Ed Reply Samantha Hello Ed, wanted to give you an update. I have had two negative COVID-19 tests and one negative antibody test since I last wrote. I've been feeling super crappy lately and I don't know if it's my body needing medication or the virus. Good thing is I'm ok, just feeling super fatigued and I wish I can explain the rest. Hope all is well, you are safe and healthy. Reply Ed Tobias Hi Samantha, Thanks for the update. I'm glad that it appears your problem isn't COVID. Check out my column tomorrow (May 29) and you'll see that I've also been having a few problems of my own, lately. I've had more physical and mental fatigue than my usual level, recently. I think it's a reaction to the stress and boredom of self-isolating for 3 months. Hope you fell less crappy soon, Ed Reply SANDRA I love all of the positive stories, yet only time will show the bigger picture, as I have had watched a case close to my home in Colorado play out with very different results. Scott Kaplan, 43, dx with MS 17 years ago, physically active and healthy, on Ocrevus, passed away after fighting COVID-19 for more than a month. Reply Ed Tobias Hi Sandra, I've tried to share an accurate picture of what's happening in the MS/COVID-19 world, whether it's good news or bad. It seems as if this virus is attacking us all, young or old, MS or perfectly healthy. Yes, it will take time to figure out why but I believe we will. I'm sorry that it claimed the life of the (relatively) young man who lived near you. Ed Reply Mark Lange Happy to see this headline http://multiplesclerosisnewstoday.com/news-posts/2020/04/20/covid-19-in-a-ms-patient-treated-with-ocrelizumab-does-immunosuppression-have-a-protective-role/. Of course it's only 1 case, but I'll take it. At the moment, I'm going push my next Ocrevus infusion out 1 month (time to meet my new neuro, and for more headlines like this one to come in!). If folks know of any other happy Ocrevus news, or are a happy Ocrevus-COVID survivor....do tell! Mark Reply Ed Tobias Hi Mark, Keep an eye on Twitter for posts with the hashtag #MSCOVID19. There are regular reports about MS, DMTs and COVID19 there. Good luck with the next O infusion. Ed Reply Michele I have MS, on Ocrevus, next infusion May 18th, 2020. It is possible my brother had Covid -19 the last week in February. I had runny nose, whenever I blew nose felt like something was being released from tear ducts, also had diarrhea. Migraine headache about two weeks ago for 3 days. What if I had virus and receive Ocrevus. Will it come back or if so could it be worse? Is there any data on such a scenario? Reply Daisy Serrano I have MS for 12 yrs now and I am on Tecfidera for the last 6 yrs. Tested positive for Covid this week. I showed no symptoms other than a persistent headache for a month now. Very low fever twice (100.3 F) Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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