COVID-19 Recommendations for the Duchenne Community - Parent Project Muscular Dystrophy

PPMD COVID-19 Information Center

COVID-19 & Duchenne: Recommendations

COVID-19 Recommendations for the Duchenne Community

PPMD is in contact with the Centers for Disease Control (CDC) and monitoring for any specific recommendations pertinent to the Duchenne population. PPMD also continues to consult with physicians from many of our Certified Duchenne Care Centers to determine recommendations specific to the Duchenne population. Please bookmark this page and check back regularly as new information and resources become available.

Below are links to important resources, as well as a list of FAQs regarding COVID-19 and Duchenne. We consulted experts in our community for answers to some of the questions we have received.

Please continue to submit questions to ellen@parentprojectmd.org, so we can continue to adapt our resources to your concerns.

Consensus Statement Publication

PPMD is excited to share the publication of a consensus statement for the care of persons with Duchenne and Becker muscular dystrophy during the COVID-19 pandemic. This article is the result of a group of expert clinicians in our community, many representing Certified Duchenne Care Centers. The publication outlines consensus recommendations if a person with Duchenne or Becker were to be diagnosed with or suspected of infection with COVID-19, and guides physicians and caregivers on best practices for management and treatment.

View the Report >

Care Imperatives Fact Sheet

PPMD has created an easy-to-use fact sheet that provides high-level takeaways for the care of individuals with Duchenne and Becker during the COVID-19 pandemic, based on information from the recently published article accepted to Muscle & Nerve. This article was the result of a group of expert clinicians in our community, many representing Certified Duchenne Care Centers. Please download and print this guide and share it with your family and medical team.

Download Fact Sheet >

General COVID-19 Infection Questions

Can the virus re-infect the same patient?

Response March 27, 2020

We don’t have enough data to determine this, but as we see the number of newly diagnosed cases in China decline, this suggests that the virus does not re-infect the same patient.

How long is the virus airborne? How long does the virus live on different surfaces?

Response March 27, 2020

The virus can be airborne for about one hour, and can live 1-2 days on surfaces, though this can vary on the type of surface. Be sure to clean surfaces at least once or twice daily.

Are carriers considered at higher risk?

Response March 27, 2020

Being a carrier does not necessarily put you at a higher risk for complications from COVID-19. The risk is more dependent on age, underlying health issues (i.e. cardiac dysfunction), and other factors. If a Duchenne carrier is experiencing severe symptoms of a COVID-19 infection, it is important to connect with a specialist who has experience in treating carriers of Duchenne.

Treatment questions

At what point should a person with Duchenne be tested? Prior to symptoms, at time of possible exposure, or at time of minor symptoms?

Response March 27, 2020

The decision to test for COVID-19 should come from your doctor. This is dependent on symptoms and other underlying health issues, such as decreased pulmonary function.

If a person with Duchenne is diagnosed or suspected to have COVID-19, should they be taken to the hospital or treated at home?

Response March 27, 2020

PPMD recommends letting your or your child’s neuromuscular team know if the person with Duchenne starts demonstrating symptoms of COVID-19. They may recommend doing a telemedicine visit first to evaluate you or your child before making recommendations.

Most pediatric cases of COVID-19 are mild and can be managed at home. If your child is suspected of COVID-19 but is able to managed at home, this is ideal.

What should I do if ill?

Response March 12, 2020

Cases of coronavirus in children are rare, typically very mild, and do not require hospitalization. However, mildly affected children may pass coronavirus to people with whom they come into contact, like older adults and people at higher risk. To date, there are no documented cases of coronavirus in a person with Duchenne.

If you feel you or a family member shows symptoms of coronavirus — fever, cough, shortness of breath — contact your medical provider immediately. Emergency warning signs of coronavirus include difficulty breathing, persistent pain or pressure in the chest, new confusion or inability to rouse, and bluish lips or face.

There remains little information known about the effect of coronavirus on Duchenne, but if a person with Duchenne were to contract coronavirus, multidisciplinary care including neurology, pulmonology, and infectious disease, and many others would be required. If you are concerned that you or someone you care for with Duchenne has contracted coronavirus, please contact your medical team for guidance specific to your circumstances.

Please know that PPMD continues to monitor coronavirus developments closely and is in regular communication with the CDC and Duchenne physician community. We recognize that an outbreak like this is scary, and we are working tirelessly to provide accurate, up to date recommendations for families. Please keep an eye out for additional information from both PPMD and CDC as it becomes available.

What over-the-counter medications are safe to use?

Response March 17, 2020

You should always check with your primary health care provider and/or your neuromuscular provider regarding the safety and dosing of any medications. Over-the-counter medications that are generally safe for colds and flu can be found below. If you/your child has a fever over 104⁰F that is not responding to Tylenol (going down to at least 102^o F within 1-2 hours of giving Tylenol), please ask your primary care provider and neuromuscular team if it is safe to use ibuprofen (Advil^R) and/or naproxen (Aleve^R). Be sure that the person that you ask is aware of ALL medications that are being taken (including ACE inhibitors).

For children over 4 years, the following over-the-counter medications are generally safe for people with Duchenne to take:

Tylenol (acetaminophen)
Cough medicine without Sudafed cough medicine with cough suppressant should be used if the cough is interfering with sleep; using cough medicine with cough expectorants, using Mucinex, maximizing hydration, and using the cough assist during the day may help minimize coughing at night
Cough drops
Mucinex (check with your pulmonologist; some pulmonologists caution against using Mucinex in patients with breathing dysfunction; the thinned secretions may cause aspiration of the secretions, which can lead to an increased risk for pneumonia)
Saline nose drops/spray

March 26 WEBINAR RECORDING: COVID-19 & MEDICATIONS — WHAT IS SAFE IN DUCHENNE?

I heard that ibuprofen is dangerous to give to people who have COVID-19. Is that true?

Response March 17, 2020

There is a lot of information swirling around about medications that are safe or unsafe to give to someone who has COVID-19. The FDA recently released more information on the use of non-steroidal anti-inflammatory drugs (NSAIDs) for COVID-19. At this time, FDA is not aware of scientific evidence connecting the use of NSAIDs, like ibuprofen, with worsening COVID-19 symptoms. The agency is investigating this issue further and will communicate publicly when more information is available.

Regardless, ibuprofen can potentially be harmful to people with Duchenne and put people at risk for bleeding. For pain and fever management, acetaminophen (Tylenol) is recommended. If you are concerned about use of ibuprofen, acetaminophen, and other over-the-counter medications, consult with your neuromuscular doctor.

March 26 WEBINAR RECORDING: COVID-19 & MEDICATIONS — WHAT IS SAFE IN DUCHENNE?

Should I use Vicks to help open my airways?

Response April 6, 2020

Vicks is a known neurotoxin and should not be used. It creates a false sense of open airways because it enhances the cold-receptors in the nose, which creates a perception of increased airflow without actually increasing airflow.

Is there any validity to the assertion that nothing should be used to reduce low fever unless it spikes, because fever plays a role in fighting the virus? If yes, what temperature range should be left alone, and above what temperature level should be treated?

Response April 6, 2020

There currently is no evidence that fever is helpful in combatting the virus, so take Tylenol to feel comfortable. If you have a persistent fever above 102 despite taking Tylenol, seek medical evaluation.

Is hydroxychloroquine (Plaquenil) something to consider, Duchenne or not?

Response March 27, 2020

We do not yet have any data on hydroxychloroquine (Plaquenil) in the Duchenne population. Do not start this medication without close supervision from an individual familiar with the use of the drug. It is not currently recommended for use against COVID-19. There are clinical trials underway to explore its use.

Given the potential for chloroquine/hydroxychloroquine to prolong QT interval and the association of cardiac arrhythmia in Duchenne, is there any contraindication for those with Duchenne to use combo therapy of hydroxychloroquine and azithromycin (Z-pack) assuming this treatment continues to show promise against COVID-19?

Response March 27, 2020

The potential problem with the Z pack is that it may cause EKG changes (in particular the QT interval, which is the time it takes the heart to reset). If the QT gets very long, it can put people at risk for severe heart rhythm problems.

It is important to note that Z-packs alone don’t typically prolong the QT interval. It is the combination of chloroquine and other medications that can lead to this change. If you are going to start these medications, talk to your prescriber about medications that might contribute to this.

General Precaution Questions

What are the general precautions to protect yourself and others?

Response September 25, 2020

Understand how COVID-19 spreads

The best way to prevent illness is to avoid being exposed to this virus
The virus is thought to spread mainly from person-to-person, including people who are in close contact with one another (within about 6 feet), through respiratory droplets produced when an infected person coughs, sneezes, or talks that can land in the mouths or noses of people nearby
Some recent studies have suggested that COVID-19 may spread by people who are not showing symptoms

Wash your hands often

Wash your hands often with soap and water for at least 20 seconds especially after you have been in a public place, or after blowing your nose, coughing, or sneezing
If soap and water are not readily available, use a hand sanitizer that contains at least 60% alcohol. Cover all surfaces of your hands and rub them together until they feel dry

Avoid close contact

Inside your home: avoid close contact with people who are sick. If possible, maintain 6 feet between the person who is sick and other household members
Outside your home: put 6 feet of distance between yourself and people who don’t live in your household, and remember that some people without symptoms may be able to spread the virus

Cover your mouth and nose with a mask when around others

Everyone should wear a mask in public in public settings when around people who don’t live in your household, especially when other social distances measures are difficult to maintain
Continue to keep about 6 feet between yourself and others. The mask is not a substitute for social distancing

Cover coughs and sneezes

Always cover your mouth and nose with a tissue when you cough or sneeze and immediately wash your hands with soap and water for at least 20 seconds

Clean and disinfect

Clean AND disinfect frequently touched surfaces daily, which includes tables, doorknobs, light switches, countertops, handles, desks, phones, keyboards, toilets, faucets, and sinks.

Monitor your health daily

Be alert for symptoms; watch for fever, cough, shortness of breath, or other symptoms of COVID-19

Protect your health this flu season

It’s likely that flu viruses and the viruses that cause COVID-19 will both spread this fall and winter, meaning getting a flu vaccine during 2020-2021 is more important than ever.

Source:

https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html

What are general precautions & preparations that should be taken for people who may be at higher risk for severe illness from COVID-19?

Response September 25, 2020

The CDC recently revised guidance for people who may be at higher risk of developing complications from coronavirus:

Reduce your risk of getting COVID-19 by limiting your interactions with other people as much as possible and take general precautions (see question above) to prevent getting COVID-19 when you do interact with others
People at increased risk of severe illness from COVID-19, and those who live with them, should consider their level of risk before deciding to go out and ensure they are taking steps to protect themselves (see question above). Consider avoiding activities where taking protective measures may be difficult, such as activities where social distancing can’t be maintained
Stay healthy during the COVID-19 pandemic by ensuring vaccinations and other preventative services are up-to-date to help prevent you from becoming ill with other diseases
Continue to follow your treatment plan, including:
- Continue your medicines and do not change your treatment plan without talking to your doctor
- Have at least a 30-day supply of prescription and non-prescription medicines if possible
- Do not delay getting emergency care for any issues because of COVID-19
- Call your healthcare provider immediately if you have any concerns if you get sick and think you may have COVID-19
Getting a flu vaccine during 2020-2021 is more important than ever because of the ongoing COVID-19 pandemic.

Actions you can take based on your medical conditions and other risk factors as defined by the CDC:

Immunocompromised state (weakened immune system) from blood, bone marrow, or organ transplant; HIV; use of corticosteroids; or use of other immune weakening medicines

Continue any recommended medicines or treatments and follow the advice of your healthcare provider
Do not stop taking medicines without talking to your healthcare provider
If possible, have at least a 30-day supply of your medicines
Do not delay life-saving treatment or emergency care
Call your healthcare provider if you have concerns about your condition or feel sick

While children have been less affected by COVID-19 compared to adults, children with certain conditions may be at increased risk for severe illness. This includes children who are medically complex, who have serious genetic disorders, lung disease, or immunosuppression might be at increased risk.

Actions to take:

Give medicines as prescribed for your child’s underlying conditions
If possible, have at least a 30-day supply of your children’s medicines
Call your child’s healthcare provider if you have concerns and to discuss your child’s specific conditions and risk for severe illness from COVID-19
Well-child visits and vaccines are still important during the COVID-19 pandemic. Stay in contact with your child’s healthcare provider and make sure your child is up-to-date with vaccines to prevent other diseases.

Source: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html

If you are a person with Duchenne, or care for a person with Duchenne, please consider the following best practices:

If you have a cough assist machine or chest therapy device, ensure it is in proper working function and use it as prescribed. If you do not routinely use it, familiarize yourself with it to ensure you know how to use it, should it become necessary. If you are sick, increase the frequency by which you use it, and speak with your pulmonologist about any other recommendations.
If you are on daily steroids, please coordinate with your prescribing physician to ensure you have oral and injectable stress doses available at home if you develop a high fever. Do not make sudden changes to your steroid regimen.
Make sure you have a supply of acetaminophen (Tylenol) for fever reduction.
Ensure all prescribed medications are up to date and you have an adequate supply at home. Speak with your pharmacist about filling medications early if necessary.
If you are concerned about attending school and are immunocompromised and/or having impaired lung function, speak with your neuromuscular team about whether staying home from school is best for you.
Consider rescheduling non-essential medical evaluations, discussing telehealth options with your providers, and avoiding travel to hospitals to reduce the chance of exposure.
While coronavirus is different from the flu, consider the following illness management recommendations.
Keep in mind other emergency care considerations.

We have home nursing (care, infusions). Should I allow them to enter the home? What precautions should we take?

Response March 25, 2020

Although PPMD recommends limiting unnecessary visitors to your home, some aspects of home healthcare are essential. If possible, limit the number of outside healthcare workers that enter your home. Ensure your home health nurse(s) takes all appropriate precautions in accordance with guidance issued by the Centers for Disease Control and Prevention, including hand washing and wearing personal protective equipment (PPE). In addition, nurses who are sick, or have had potential exposure to someone infected with COVID-19 should not come into work. If you have any concerns, you may reach out to your home healthcare company (or your SareptAssist Case Manager in the case of home infusion of an FDA-approved Sarepta product) to discuss precautions implemented by your provider and a plan that is safest for you or your child.

If your child receives infusions from home, for either a clinical trial or an approved drug, they should continue to do so if possible. Take the same precautions as mentioned above, and if you have any concerns about receiving the infusion, please contact your neuromuscular team or clinical trial site.

What if I am on an FDA approved therapy that is on a weekly schedule?

Response March 23, 2020

For those patients on approved therapies such as EXONDYS 51 or VYONDYS 53, we do not consider these treatments to be elective and to the extent possible should not be delayed. Patients should reach out to their healthcare providers as well as SareptAssist to work through your infusion schedule so that long periods of delay in treatment can be avoided. To contact SareptAssist call 1-888-SAREPTA (1-888-727-3782). Case Managers are available Monday Friday 8:30am 6:30pm ET

I am not currently on an FDA approved treatment, but I am working with my healthcare provider to obtain approval to start treatment. What should I do?

Please work with your healthcare provider to obtain approval and schedule dosing for as soon as reasonably possible. Planning to receive an approved treatment should include strategies to avoid possible exposures to COVID-19, such as avoiding waiting rooms and being placed in a procedure room shortly after arrival. It may be necessary to work with your healthcare provider and the drug company to arrange home administration or access of the therapy. If you are having trouble reaching your trial site for more information please contact rachel@parentprojectmd.org

My child has weekly (physical and occupational therapy, infusion) appointments at the hospital. Should we cancel, or keep going?

Response March 17, 2020

PPMD does not have specific guidance for these decisions, but we recommend isolating your family as much as possible. This means avoiding going out in public, as well as restricting who can enter your home. If possible, cancel or postpone non-emergent appointments. Talk to your child’s neuromuscular team and discuss an alternative plan, such as therapy you can do from home.

As stated above, it is recommended that your child continues to receive infusions on schedule. If you have concerns about traveling or going to a hospital, consult with your neuromuscular care team or clinical trial site about the safest option for your child to continue to receive infusions.

PPMD recognizes there are many unanswered questions about screening, dosing, and immunity in regards to gene therapy. We are discussing these topics with companies and sites and will keep the community informed as more information comes out.

We have an upcoming clinic visit. Should we attend, or reschedule?

Response September 25, 2020

Many clinics have commenced re-opening clinic to in-person visits. Speak with your medical team to evaluate whether and in-person visit or telehealth visit is most appropriate given risk factors specific to your family. This may be based upon personal health risk factors as well as local epidemiology and virus spread.

Should I send siblings or spouses to school or work? Should I quarantine my spouse from my child who works outside the home?

Response March 17, 2020

If you are keeping your child home from school, consider keeping siblings and others living with you at home, too. If they do not utilize the same precautions, they could potentially carry the virus and spread it to other members of the family. For adults living with you who are unable to work from home, consider decontamination practices upon returning home: removing clothing worn outside of the home, immediately showering, practicing hand hygiene, covering their cough, and social distancing. Consider minimizing contact with at-risk people in the home.

Should we get the regular flu shot right now if that is the government advice?

Response April 6, 2020

Absolutely. You don’t want to have another illness that could lead to hospitalization and secondary exposure to COVID-19. Prevention is key.

Should I/my family member wear a mask if we have to leave the home?

Response April 6, 2020

Previously, the recommendation from the CDC was to not wear a mask in public unless you were sick. However, as researchers and doctors learn more about asymptomatic carriers of COVID-19, guidance has changed. If you must leave the house, consider wearing a non-surgical mask to cover your mouth and nose. This is to prevent the spread of germs from you to those with whom you make come into contact. It will not, however, protect you from becoming ill. Learn how to make a mask here.

What type of mask should I wear?

Response September 25, 2020

Research shows that masks may be helpful in reducing transmission of COVID-19. When selecting a mask, choose one that is made of two or more layers of washable, breathable fabric, completely covers your nose and mouth, and fits snugly against the sides of your face and doesn’t have gaps. Currently evolving research suggests that gaiters and face shield may not be effective, but not enough is known at this time. Use caution with these and consider choosing a mask that meets above criteria instead. To learn more about how to select and care for your mark, click here.

Who should wear a mask?

Response September 25, 2020

Anyone two years of age or older in a public setting or when around people who don’t live in your household, or when social distancing is difficult. To learn more about the use of masks to help slow the spread of COVID-19, visit the CDC website.

Should my son with Duchenne who has impaired breathing wear a mask?

Response September 25, 2020

If wearing a mask causes difficulty breathing, are unable to remove a mask without assistance, or are less than two years of age, do not wear a mask. If you are unsure if you are able to tolerate wearing a mask in public, consider trialing your mask at home for short periods of time. If you are unable to wear a mask, consider other ways by which to minimize your risk.

Emergency room / hospital precaution questions

If my child is admitted to the hospital, will they be in isolation and will a parent be allowed to be with them? With COVID19 or for any other reasons?

Response March 27, 2020

If your child is hospitalized for symptoms of COVID-19, they will be isolated until the test is positive, then potentially moved to a special negative airflow room or unit that is intended for COVID-19 patients. If they test negative for COVID-19, isolation will be dependent upon the cause of illness (influenza, other infectious disease, etc.). While each hospital policy may be different, at least one parent will likely be permitted to stay with the child. Additional visitors may be restricted.

If my adult child is admitted to the hospital whether for COVID-19 or another health problem, will I be able to stay with him?

Response September 25, 2020

Know your rights! Hospital policies may vary widely across the country, but certain rights are protected regardless. Ask to speak with a social worker, ombudsman, or patient advocate. Keep any legal paperwork handy. You can read more about your rights here.

What instructions do we give to healthcare providers if a person with Duchenne needs to be hospitalized with COVID-19?

Response March 27, 2020

Be sure to let the medical team know that your child has Duchenne. Give them PPMD’s emergency care considerations. You can show them your PPMD emergency card or use your PPMD emergency app, as well.

What sorts of things should we tell our medical team upon triage in regard to disability and discrimination? How can we best advocate for ourselves?

Response April 6, 2020

Site the bulletin from HHS website, and don’t hesitate to let your medical team know that discrimination based on disability is against the law. For more information, read the HHS bulletin here.

In the case of a COVID-19 infection that requires hospitalization, should I bring my own equipment (i.e. ventilator, BiPAP machine, Cough Assist, etc.)?

Response April 6, 2020

If you go to the hospital for any respiratory symptoms, it is always a good idea to bring your own equipment with you. There may be a shortage of equipment as hospitals right now, and ensuring you have your own equipment is key.

Pulmonary questions

What are the specific guidelines if a child/adult with Duchenne has COVID-19 and needs to be ventilated?

Response March 27, 2020

Settings for BiPAP or invasive ventilation will be specific to each person and based upon pulmonary function and severity of illness. Do not make any changes to at-home cough assist, BiPAP, or ventilator settings without the explicit direction of your pulmonologist.

What about pulmonary function? Do I need to use a cough assist device?

Response March 17, 2020

One of the major complications of COVID-19 is shortness of breath (having difficulty getting a full breath). If you have a cough assist machine or chest therapy device, ensure it is in proper working function and use it as prescribed. If you do not routinely use it, familiarize yourself with it to ensure you know how to use it, should it become necessary. If you are sick, increase the frequency by which you use it, and speak with your pulmonologist about any other recommendations. Information on the cough assist and “the vest” can be found here.

Not everyone has or needs a cough assist device. If you have normal lung function, your doctor may have not yet prescribed one. That’s okay. If you don’t need one at baseline, using one with COVID-19 may not be helpful. COVID-19 does not typically produce a significant amount of mucus with productive cough, which may also impact the usefulness of a cough assist device. If you are unsure, speak with your pulmonologist for recommendations specific to you and your situation.

How important (given the warnings about the vents in a full-face mask spraying virus into the room) is it to have a closed circuit on the ventilator if you are COVID positive and recovering at home?

Response April 6, 2020

This is dependent on the type of machine you have at home, as the type of circuit cannot be changed. In the home, a Duchenne patient isn’t a risk to others – instead, others are a risk to the Duchenne patient. If possible, develop a contingency plan in case a caregiver is identified to have a COVID-19 infection.

What about pulmonary function tests? I heard that some hospitals aren’t doing them anymore because of the risk they pose.

Response April 6, 2020

The risk of COVID-19 transmission is high to respiratory therapists because during PFTs, they are asking people to exhale forcefully. Many hospitals are not doing PFTs on anyone with any sort of viral infection. In these cases, the PFT labs are not closed, but doctors are only ordering them occasionally and on an as-needed basis. PFTs should not be done on anyone with a potential COVID-19 infection.

If you have access to an IPV (intrapulmonary percussive ventilation) machine (at your hospital or home), will the HF waves exacerbate the immune response to the virus, causing greater secretions and inflammation, or will it do what it is designed to do and remove debris and inflate the alveoli simultaneously?

Response April 6, 2020

There are very few of these machines in existence, and they are not typically used in muscular dystrophy. There is no evidence that its use is proinflammatory. Occasionally, they can be used in hospital for pneumonia. But, the pneumonia seen in COVID-19 is viral, not bacterial, and doesn’t cause many secretions that need to be cleared, so it’s use is unlikely to be helpful.

Should adults work with their neurologist/internist/pulmonologist to seek ventilator support earlier in the infection cycle? For instance, a DMD/BMD person who suddenly has fever and cough that appears to be COVID 19, and who has 80% lung capacity when healthy, may not be able to properly breathe/cough at home, even with a cough assist machine. What is the recommended approach?

Response April 6, 2020

If your baseline lung function and saturation is normal, use oxygen saturation as a gauge. If you are short of breath or it is hard to breath and have low oxygen saturation, you should be seen by a medical provider. Have a lower threshold for being seen, but if you are comfortable, don’t go to the ED and instead consider telephone or telehealth communication with your provider.

Since COVID-19 causes a dry, unproductive cough, should a cough assist machine even be used, or can it cause more harm than good, through irritation/inflammation?

Response April 6, 2020

If it’s helpful, use it. It is not going to cause harm (forces used in cough assist machines are far less than the natural forces a person without muscle dystrophy uses to cough). Don’t fear using it. If you have some secretions, clear them! Viral pneumonia could put you at higher risk for atelectasis, so the insufflation mode would be helpful.

If I am already on a ventilator, and I get sick, should I increase the settings?

Response April 6, 2020

It is recommended that ventilator settings should never be changed without the direct supervision of a medical provider. If the current settings on your ventilator do not seem to be sufficient, it is important to call your pulmonologist and/or go directly to the emergency room.

Should I obtain a pulse oximeter to use at home?

Response April 6, 2020

It is recommended you have a pulse oximeter to monitor oxygen saturation at home, especially when having symptoms of respiratory illness. Pulse oximeters are relatively inexpensive, and can be found at large chain drugstores (i.e. Walgreens, CVS, etc.), and other retailers such as Amazon and Walmart.

Cardiac Questions

My child is taking cardiac medications. Should he keep taking them?

Response March 17, 2020

As outlined in the Duchenne care guidelines, people living with Duchenne are often prescribed cardiac medication with evidence of cardiac fibrosis or changes or by age 10 even with normal imaging. Commonly prescribed medications include Angiotensin-converting enzyme (ACE) inhibitors (i.e. lisinopril, captopril, enalapril, etc.) and Angiotensin II receptor blockers (ARBs; i.e. losartan, entresto, etc.).

We are aware information has been circulated about COVID-19 (coronavirus) potentially having an increased effect on the same receptors that the medications above do. In response, families have been asking about whether they should adjust or discontinue prescribed cardiac medication.

After consulting with several cardiologists from PPMD’s Certified Duchenne Care Centers (CDCCs), they advised that it is in the best interest of patients to remain on cardiac medications as prescribed at this time. There is not enough evidence to know if these medications lead to a more severe COVID-19 infection, and there may be a greater risk in discontinuing these medications in a person living with Duchenne.

If you have any concerns about you or your child’s medications, please consult with your cardiologist or neuromuscular team.

March 26 WEBINAR RECORDING: COVID-19 & MEDICATIONS — WHAT IS SAFE IN DUCHENNE?

Steroid questions

Are steroids safe to continue? Should I wean my child off steroids if they become infected with COVID-19?

Response March 27, 2020

Yes. Do not make any sudden changes to your steroid regimen without speaking to your physician. Your physician may recommend stress dosing if you become ill. Make sure you have sufficient oral and intramuscular (injectable) stress doses available at home if you were to need them.

You should not wean your child off steroids if they become infected with COVID-19. Additional steroid coverage (stress dosing) is recommended to avoid further issues.

Should families ask for a stress dose to have on hand if a person with Duchenne gets sick or shows signs of COVID 19?

Response March 27, 2020

If a person with Duchenne is on steroids, either daily or weekend regimens, it is recommended they have both an oral dose and a dose of intramuscular (IM) hydrocortisone on hand. If you do not have this on hand, ask your neuromuscular doctor for a prescription. Which formulation (oral or injection) the person with Duchenne should take depends on symptoms and should be guided by your doctor.

How do you calculate a stress dose? What about daily vs weekend steroid regimens? What is the time period you administer the dose for?

Response March 27, 2020

It is important to remain on your prescribed steroid regimen. If you/your child become ill and is on a high-dose weekend regimen, you may consider going to a daily dose instead, but only under the direction of your physician. Severe symptoms such as fever, increased respiratory needs, and vomiting may make this change favorable.

It is also important to speak to your doctor about what stress dose is appropriate for you or your child. For more information about stress dosing, please visit our website: www.parentprojectmd.org/PJ

General medication questions

Can doctors provide prescriptions for 3 months instead of 1 month?

Response March 27, 2020

There is no reason drugs that we use on a daily basis should be backordered. However, it is important to anticipate the next month’s refill given some delays at pharmacies. You may ask for a 90-day supply as well, but this is also dependent on your insurance. Talk to your physician and your pharmacy about what options are available to you.

Long term COVID-19 affect questions

Does the virus cause lasting lung and or kidney damage?

Response March 27, 2020

This is dependent upon the severity of disease. If someone had a relatively mild disease course, lasting damage to lungs or kidneys would not be expected. It could be seen in someone who experienced a severe disease course.

PPMD COVID-19 Information Center

COVID-19 & Duchenne: Recommendations

COVID-19 Recommendations for the Duchenne Community

Consensus Statement Publication

Care Imperatives Fact Sheet

General COVID-19 Infection Questions

Treatment questions

March 26 WEBINAR RECORDING: COVID-19 & MEDICATIONS — WHAT IS SAFE IN DUCHENNE?

March 26 WEBINAR RECORDING: COVID-19 & MEDICATIONS — WHAT IS SAFE IN DUCHENNE?

General Precaution Questions

Source:

Emergency room / hospital precaution questions

Pulmonary questions

Cardiac Questions

March 26 WEBINAR RECORDING: COVID-19 & MEDICATIONS — WHAT IS SAFE IN DUCHENNE?

Steroid questions

General medication questions

Long term COVID-19 affect questions

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