Posted 28 March 2020

What we know about COVID-19 part 2

What do we know about COVID-19 for people affected by Duchenne or Becker? Due to the increasing concerns regarding the COVID-19 virus for people with Duchenne and Becker muscular dystrophy, the World Duchenne Organization had hosted a second webinar last Saturday for its members. Information is provided by World Duchenne Organization.

What is the effect of steroids on the immune system?

Dr. Jarod Wong, an endocrinologist at Glasgow University – “Steroids prescribed for DMD may have some impact on lowering the immune system. Hence, routine flu vaccination is recommended. People taking steroids have been identified as an at-risk group in the current climate by some governments. However, we do not commonly see severe, unusual and serious infections in people with DMD on steroids.”

What is the effect of steroids and COVID-19 infection in DMD?

Dr. Jarod Wong, an endocrinologist at Glasgow University – “At the moment, we are not aware of any cases of people with DMD and COVID19 infection. It is theoretically possible that if infected, the infection may be more severe. However, we simply do not know. In some countries, any person on long term steroids has been classified as at-risk and recommended to isolate for a longer period of time, for instance, 12 weeks.”

Should I stop steroids in this instance then?

Dr. Jarod Wong, an endocrinologist at Glasgow University – “No, this should not happen and is not possible. One issue with anyone taking steroids for a prolonged period i.e. longer than a few months is that the adrenal glands, which make steroids naturally, are suppressed (ADRENAL SUPPRESSION LEADING TO ADRENAL INSUFFICIENCY). Even if we do want to stop steroids, a slow plan of gradual reduction over several months is essential. To cope with severe infection, extra steroids are needed – stress dosing. Otherwise, the person could become very ill and be in an adrenal crisis. One possibility of more severe infection (of all kinds) in people with adrenal suppression from taking steroids may be that steroid management during the illness is not adequate.”

Is there anything extra you need to do if on steroids during (COVID) illness?

Dr. Jarod Wong, an endocrinologist at Glasgow University – “Regardless of the type of infection in a person with DMD taking steroids, if the person has vomiting and/or diarrhea, steroids should be given in another form. If there is access to steroids in the form of hydrocortisone injection at home, this needs to be given and then presented to the hospital. In some people with DMD on steroids (especially older boys or men on lower doses of steroids), there may be a need to increase the dose of oral steroids during mild to moderate illness, which includes fever. It would be worth checking with your neuromuscular team if this is needed. In the majority of cases, this may not be necessary. Some teams have been advising all their patients to do so to be on the safe side. Generally, this should be for a period of 48 hours but maybe longer if the person is sick. Currently, if the symptoms might be COVID related and do not resolve within 48 hours, generally the advice is to contact the relevant places for COVID advice, for instance, the national hotline. For those on intermittent steroids, a steroid plan should be in place with information on what to do if the person with DMD is unwell during the days off steroids.”

Is it true steroids might have a positive effect on COVID-19?

Prof Dr. Annamaria De Luca, pharmacologist in Italy – “It has been proposed that low dosage of steroids can be useful in a so-called cytokine storm. This is a severe phenomenon that might occur in COVID-19 patients in an advanced stage of pneumonia. Normally, our immune system can combat the infection, however, at a certain stage, there could be an excessive discharge of the virus from the infected cells, leading to massive production of cytokines. China proposed that low doses of glucocorticoids such as alpha methyl prednisolone can help reduce the storm without causing immunosuppression. There are clinical trials ongoing in COVID-19 patients, but there is some debate about the real usefulness of steroids in this condition, especially in patients already on steroids. With the information and data we have, it’s important not to stop steroids unless specifically indicated. This is also valid for other Standards of Care in patients, i.e. those receiving treatment with ACE inhibitors. It’s best to maintain drugs that are effective in controlling cardiovascular function, as evidence of the potential risk of ACE inhibitors are few and controversial.”