Coronavirus Tips for Gaucher Patients

As of 3/2/11. All information contained is provided with input from physicians on the NGF Medical Advisory Board.

Medical understanding of SARS-CoV-2, the novel coronavirus that causes COVID-19, is evolving. To maintain your optimal health, follow your local guidance and CDC COVID-19 recommendations.

A Word of Caution About COVID-19 Information

Any government agency or organization website—including this one—provides only general information. Not all of this information will apply to you. Your Gaucher specialist is the best person to advise you.

Every Gaucher patient needs an individualized care plan, not only for GD, but for all other concurrent illnesses, including COVID-19. Your treating physician can discuss your individual risk and tailor risk-reduction strategies to your needs.

You should continue all treatments and medical management of lysosomal disorders, including Gaucher disease. Before making any changes to your medical regimen, or if you need care for COVID-19-related illness, seek advice from both your Gaucher specialist and your primary care provider (PCP).

Gaucher Disease and COVID-19 Risk

So far, there is no evidence that Gaucher disease itself raises your risk of getting COVID-19 or having a bad outcome if infected. To date, relatively few cases of COVID-19 have been reported among Gaucher patients, but we still don’t know how many cases there are.

Molecular Genetics & Metabolism published an article in August 2021 entitled, The clinical spectrum of SARS-CoV-2 infection in Gaucher disease: Effect of both a pandemic and a rare disease that disrupts the immune system. It is a retrospective analysis from March 2020 – March 2021 of 11 individuals who have GD type 1.  As indicated in the abstract, “the case series suggests that GD patients acquired COVID-19 at a similar frequency as the general population, though experienced a milder overall course despite harboring underlying immune system dysfunction and other known co-morbidities that confer high risk of adverse outcomes from SARS-CoV-2 infection.”

There is also no evidence that GD or its treatments protect from SARS-CoV-2 infection or from associated complications, including death. You should continue to take precautions, follow COVID-19 prevention tips, and receive the COVID-19 vaccine, if so advised by your physician.

What we know about Gaucher patients with COVID-19

Like people without GD, most, but not all, Gaucher patients who have tested positive for the COVID-19 have had mild to moderate symptoms and did not required hospitalization before recovery.

To date, Gaucher patients, like those without Gaucher, who have developed more severe COVID-19 symptoms had other co-morbidities known to increase the severity of COVID-19. Those conditions include obesity, hypertension, cardiac conditions, or diabetes mellitus.

What we don’t know

We do not know how many GD patients have been infected with SARS-CoV-2 but haven’t had signs or symptoms. As with all other individuals, asymptomatic Gaucher patients may spread the virus to family members and others.

For anyone exposed to and infected with SARS-CoV-2, including those with GD, we still cannot accurately predict who will get serious or even fatal disease. For more information about your risk, speak to your doctor.

Gaucher and New Coronavirus

The SARS-CoV-2 virus continues to mutate (change). All viruses mutate to increase their chances of survival. Viruses can mutate faster when they infect more hosts.

Scientists have identified several new strains of SARS-CoV-2 originating around the world, including strains from the United Kingdom, South Africa, Brazil, and Finland. Currently, the Omicron variant is the predominant strain in the United States and other countries. The Omicron variant spreads more easily than the Delta variant and people who are infected with Omicron can spread the virus to others, even if they are vaccinated or don’t have symptoms.

Current vaccines provide significant protection against severe illness, hospitalizations and death due to an Omicron infection. However,  breakthrough infections with the Omicron variant are likely to occur in many who are fully vaccinated, inclusive of a booster. People who are up to date with their COVID-19 vaccinations and are infected with Omicron have more protection and are less likely to experience serious illness than those who are not vaccinated.

Patients with GD should continue to follow the current local recommendations for masking, social distancing (even from vaccinated individuals), and restricted travel. The CDC public health recommendations for fully vaccinated individuals provides guidelines for those who are fully vaccinated. As with any other question relating to your health, your best resource is to contact your PCP and Gaucher specialist.

Key Information About Gaucher Disease and COVID-19

Get the facts about COVID-19, the disease caused by the novel coronavirus, discover how Gaucher diseases impacts your risk, and learn what you can do to protect yourself and others.

People with COVID-19 may experience a variety of symptoms, from mild to severe. According to the Centers for Disease Control and Prevention (CDC), potential symptoms of COVID-19 infection include:

  • Fever or chills
  • Cough
  • Breathing trouble or shortness of breath
  • Fatigue
  • Muscle aches
  • Headache
  • New loss of smell or taste
  • Sore throat
  • Congestion or runny nose
  • GI symptoms such as diarrhea, abdominal pain, nausea or vomiting

Some symptoms are an emergency

Call 911 if you develop:

  • Difficulty breathing
  • Persistent chest pain or pressure
  • New confusion or inability to become alert
  • Trouble waking up or staying awake
  • Bluish, pale, or gray lips or face

In the United States, a small number of children with COVID-19 have presented with multisystem inflammatory syndrome in children (MIS-C) – 6,851 since the beginning of the pandemic through January 31, 2022. Of these cases, the median age was 9 years with half of the cases occurring in those between the ages of 5-13 years.

This childhood inflammatory disease, which has similarities to Kawasaki disease, may be due to SARS-CoV-2 infection. Some children developed MIS-C despite not having any COVID-19 symptoms.

MIS-C may occur days to weeks after COVID-19 illness. Some children developed severe heart and multiple organ complications necessitating intensive care. If you think your child has signs of severe illness, call 911 or your pediatrician right away. Learn more about MIS-C.

While most people recover from COVID-19 after a few weeks, some people can have long-lasting and serious effects, including heart inflammation (myocarditis). These ongoing symptoms are often referred to as long COVID, post-acute COVID or long-haul COVID.

Researchers are still learning about long COVID. Preliminary data suggests that approximately 1 in 10 people may experience long COVID. Long COVID can affect anyone, including people who had very mild symptoms of COVID-19. Talk to your doctor about your risk or any ongoing symptoms following illness with COVID-19.

According to CDC and the World Health Organization (WHO), COVID-19 spreads primarily through person-to-person contact. When an infected person coughs, sneezes, or talks, they produce respiratory droplets that can spread the virus.

In some circumstances, such as small, crowded indoor spaces with poor ventilation, the SARS-CoV-2 virus may spread through the air. Rarely, the virus may spread via contaminated surfaces, especially if people touch their faces after touching a surface. Learn more about how COVID-19 spreads.

Tips for preventing COVID-19

The best way to prevent the spread of the virus is to limit contact with infected people. Some people become infected but never show symptoms, so EVERYONE needs to follow these guidelines:

  • Wash your hands often with soap and water for at least 20 seconds.
  • Use hand sanitizer that contains at least 60% alcohol if soap and water are not available.
  • Avoid touching your face.
  • Avoid close contact with people who are sick.
  • Clean and disinfect frequently touched surfaces.
  • Practice social distancing (stay at least 6 feet away from anyone outside your household).
  • Wear a mask that covers your mouth and nose if you must leave the house.

If you are sick:

  • Stay home.
  • Cover your coughs and sneezes with a tissue.
  • Inform your doctor, especially if you experience symptoms of COVID-19.

Based on what we know so far, most people with Gaucher disease, without other underlying conditions, do not appear to be at higher risk of severe COVID-19-related illness. However, talk to your Gaucher specialist about how to protect yourself if you have any of the following GD-related conditions or other risk factors:

  • Lung, kidney, liver, or spleen involvement
  • Splenectomy (surgical removal of your spleen)
  • Immunodeficiency (weakened immune system)
  • Lack of mobility because of severe bone disease
  • GD and Parkinson’s disease

General risk factors

In the general population, people at higher risk of severe illness from COVID-19 include those who:

  • Are age 65 or older
  • Live in a nursing home, group home, or long-term care facility
  • Have underlying medical conditions

[h4] Other conditions that increase risk

You may fall into a higher risk group if you have Gaucher disease and other serious risks. Talk with your doctor if you have additional conditions, including, but not limited to:

  • Chronic heart, lung, liver, or kidney disease
  • Hypertension (high blood pressure)
  • Diabetes
  • Moderate or severe asthma
  • Obesity (BMI greater than 30)
  • Clotting problems

Visit CDC’s pages on people at higher risk and suggested precautions for high-risk groups to learn more.

It is important to continue managing your condition despite the disruptions caused by the pandemic. Here are some tips for safely maintaining your Gaucher care:

  • Discuss your unique situation with your Gaucher specialist. Your specialist can answer your questions and may help set your mind at ease. Your doctors can help make sure you’re getting the care you need.
  • Review your medications with your Gaucher specialist. Also discuss your medications with any other doctors who prescribe medications for you. Discuss your medications at every visit and whenever your health or medical conditions change.
  • Continue treatment, as recommended by your Gaucher specialist. Staying on treatment is the safest way to control Gaucher disease.
  • Use telehealth appointments rather than in-person visits whenever possible.

Enzyme replacement therapy (ERT)

Continuing ERT is safer than stopping it, even during the pandemic. The main risk with ERT is potential exposure to coronavirus when you receive your infusion. You can take steps to minimize your risk of exposure:

  • Wear a mask with at least 2 layers covering your mouth and nose.
  • Ensure staff providing infusions wear personal protective equipment (PPE).
  • Be aware that infusion centers may have added safeguards that keep you safer than home infusions.

Substrate reduction therapy (SRT)

Continue taking SRT unless your doctor tells you otherwise. The main risk from SRT is potential interactions with other medications. Tell any medical providers about all medicines you take.

Eliglustat (Cerdelga®) interacts in various ways with many medications. Doctors should carefully assess potential interactions before prescribing:

  • Antidepressants
  • Certain pain medications
  • Azithromycin, which has been used to treat symptomatic COVID-19 patients. On its own, azithromycin can cause dangerous heart rhythm problems. Eliglustat can increase that risk.
  • Hydroxychloroquine
  • Remdesivir, an antiviral used for COVID-19 infection

Before taking any other medication, make sure your doctors know you are taking Eliglustat (Cerdelga®). Have them contact your Gaucher specialist to discuss the possibility of taking a break from Eliglustat (Cerdelga®) until you don’t need the other medications.

Any medical professionals providing urgent care for COVID-19 need to know about your underlying conditions. Here are four steps you can take to educate healthcare providers about Gaucher disease:

  • Inform any doctors or other healthcare providers—whether outpatient, emergency room, or hospital—that you have Gaucher disease.
  • Bring basic patient information with you.
  • Provide contact information for your Gaucher specialist.
  • Insist that any physician who is caring for you and who is not familiar with Gaucher disease call a Gaucher expert to discuss your case.

Additional Coronavirus Resources for Gaucher Patients

Gaucher disease is one of many factors that uniquely affect your health. Seek advice from your Gaucher specialist as well as your PCP. Other resources that may interest you include:

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