New International Working Group Answers COVID-19 Questions from Myasthenia Gravis Patients


New information, speculation, statistics, and predictions about COVID-19 are hitting the internet every day. Yet neurologists are attempting to answer their patients’ questions without having sufficient data that would allow definitive answers.

According to a recent article in Neurology Today, neurologists have scant data on how COVID-19 will affect their patients.

In response, using the limited information released to date, experts in the field of neurology have set out new guidelines in the treatment of Lambert-Eaton myasthenic syndrome (LEMS) and myasthenia gravis (MG) in the COVID-19 environment.

Input from an International COVID Working Group

The Working Group was formed because patients who are being treated with immunosuppressing drugs are aware of infections or serious complications from the virus that could arise.

Dr. Richard Nowak at Yale University is a prominent member of the newly-formed International MG/COVID-19 Working Group that took part in developing the guidelines. Dr. Nowak emphasized the importance of mitigating exposure to COVID without restricting patient care.

He explained that patients with MG are a special risk group and are especially vulnerable to complications from COVID-19.

Guideline Specifics

The guidelines were published online in the Journal of the Neurological Sciences in March 2020 and included advice such as:

  • Individualizing treatment decisions
  • Physicians should not take their patients off immunosuppressive therapies
  • Consider either postponing clinic infusions and blood tests or moving them to the patient’s home
  • Delaying the B-cell depleting therapies
  • Using telemedicine and telehealth visits

The national guidelines regarding masking, social distancing and hand washing are included, plus a total of fifteen recommendations.

The neurologists added an alert directed to patients that they should not discontinue their medication without first consulting their physicians.

Benefits of Continuing Treatment

Although the Working Group acknowledges the increased risks of immunosuppressive treatments relating to the virus, it emphasizes that there is a greater risk involved by discontinuing the treatment.

Dr. Nowak said that the treatment should continue if the patient is stable and only consider discontinuing if there is increased disease activity.

The doctor was emphatic that if immunotherapy is discontinued, there is a risk of progression. This also increases the risk in connection with COVID-19. He said that so far there is no evidence that infusion therapies increase COVID risk.

The Changing Landscape

Recently Dr. Nowak’s facility has been coping with the challenges presented by arranging at home infusions. He commented that they can only do their best and work through it on a case-by-case basis.

Part of these transitions includes telehealth visits and helping patients set up their computer systems. The computer systems are being programmed through MyChart, which is part of the EPIC electronic records system.

Dr. Nowak said that telehealth visit reimbursements have been well coordinated. He also mentioned that Medicare has expanded telehealth access.

There has been an increase in appointments with physicians by video and telephone. Dr. Nowak said that unless there is an emergency, almost all their patients have been transitioned to telehealth.

The doctor suggested that if a patient’s treatments call for blood work, and if their counts are stable, it may be possible to delay lab visits.

About B-cell Depletion Therapy

The Working Group gives B-cell depletion therapy special consideration because it presents a greater risk in connection with viral complications.

Dr. Nowak said that if a patient is benefiting from the therapies they should remain on them. But he added that it is not advisable at this time to begin these treatments unless there are no other options.

MG Patients with COVID-19

Dr. Nowak and his associates are currently treating three myasthenia gravis patients who have also been infected with COVID-19.

In this regard, the Working Group will be publishing a registry for MG/COVID-19 patients with the intent of analyzing the effect of the virus on various aspects of MG.

What are your thoughts about telehealth and remote doctor appointments? Share your stories, thoughts, and hopes with the Patient Worthy community!

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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