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Questions and Answers Regarding COVID-19 Vaccines

Read guidance on COVID-19 vaccines from the American College of Rheumatology

The following information was updated August 20, 2021, by the Scleroderma Foundation's Medical & Scientific Advisory Board.

Preamble

The COVID-19 pandemic is from the SARS-CoV-2 virus and thus far is responsible for more than 209 million cases and 4.3 million deaths worldwide, with 37.1 million cases and 625,000 deaths in the USA (as of August 20, 2021). The numbers are rising. COVID-19 is now the leading cause of death in the USA. You can view an integrated, county view of key data for monitoring the COVID-19 pandemic in the United States at https://covid.cdc.gov/covid-data-tracker/#county-view.

Recommendations continue to evolve as we learn more. Most recently, the CDC has updated guidance for fully vaccinated people based on new evidence on the Delta variant. These questions and answers are only a guide and should not replace discussion with your health care provider.

The three vaccines approved in North America are the Pfizer-BioNTech, Moderna, and Johnson & Johnson vaccinations. Other vaccines are available in different parts of the world. The Pfizer-BioNTech and Moderna vaccination will be in a series of two injections provided either three weeks (Pfizer-BioNTech) or 28 days (Moderna) apart. The Johnson & Johnson vaccine is a single dose.

Everyone 12 years of age and older is now eligible to get a free COVID-19 vaccination. Learn more about the different vaccines available at https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines.html.

If receiving any other vaccine, such as the common flu, a period of 14 days should elapse before receiving either your first or second dose of the COVID-19 vaccine.

Commonly Asked Questions

Should I get the COVID vaccine?

Yes, however if you have systemic sclerosis (scleroderma) there may be some things you should know before you receive it. The vaccines so far have not been specifically tested in pregnant women, children below age 12, or large numbers of patients with autoimmune diseases, although studies are underway. As more data are available, recommendations may include them.

What is the benefit?

The vaccines against COVID-19 are highly effective. The benefits of vaccination include prevention of COVID-19 infection, or less severe infection, and herd immunity (stopping the spread in your community when enough people are vaccinated). Due to the significant amount of people who have died or been very sick with COVID-19, the hope is to prevent severe infection and its long-term effects. However, the efficacy of the vaccine may be less in individuals receiving treatment with immunosuppressive medications.

What do I do with my medications/drugs when I get the vaccination?

Although there is limited information regarding the effect of immunosuppressive medications on the efficacy of the COVID-19 vaccine, the American College of Rheumatology has issued guidelines that provide some guidance regarding medication adjustments around the time of the vaccine. These guidelines should be considered on a case-by-case basis depending on the specifics of your condition, and you should consult your physician on this matter.

Will this flare my scleroderma?

We do not know, but a flare of scleroderma should not be common as many other vaccinations that boost the immune system do not routinely flare autoimmune diseases in the vast majority of people who receive vaccines, although this has not been studied in a controlled trial.

The vaccine will not be 100% effective, so all recommendations after being vaccinated will still be present such as wearing a mask, frequent hand washing, and social distancing.

Is there a special risk for me as I have scleroderma?

Poor outcomes with COVID-19 infection are associated with advanced age, heart disease, chronic obstructive lung disease, diabetes mellitus, high dose prednisone, and other minor risk factors such as high blood pressure and high body mass index (obesity). It is likely that those with recurrent infections and those who are frail also have a higher risk of doing poorly. We suspect that having interstitial lung disease or pulmonary hypertension or recurrent aspiration from poor motility of the swallowing tube (esophagus) put those with systemic sclerosis at a higher risk, making vaccination an important consideration for these and most other patients. 

The risk is likely not increased in those with morphea and linear scleroderma unless they are on strong immune suppression treatment.

For more information regarding people at increased risk and others who need to take extra precautions, see https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/index.html.

Should I wear a mask?

Yes. Immunocompromised and immunosuppressed individuals should wear a mask when outside the home to safeguard against infection. The CDC also recommends fully vaccinated people wear a mask indoors in public if you are in an area of substantial or high transmission.

Wearing a mask in public is also recommended by the CDC if you or someone in your household:

  • have a weakened immune system,
  • are at increased risk for severe complications from COVID-19, and/or
  • are unvaccinated.

If this applies to you or someone in your household, you might choose to wear a mask regardless of the level of transmission in your area.

You should also continue to wear a mask where required by laws, rules, regulations, or local guidance.

If you develop symptoms that suggest infection, you should wear a mask even inside the home. Wearing a mask will help to catch the droplets you produce by coughing or sneezing and, thus, reduce the odds of infecting family members or others.

How long will the vaccine be effective for?

Available data suggest that protection against SARS-CoV-2 infection begins to decrease over time following the initial doses of vaccination, and in association with the dominance of the Delta variant, there is new evidence of reduced protection against mild and moderate disease.

In addition, currently available data show that the vaccine doesn't always provide adequate levels of protection after an initial 2-dose primary mRNA COVID-19 vaccine series for people who are moderately to severely immunocompromised. The data also show that they may benefit from receiving an additional dose of an mRNA vaccine to develop as much protection as possible against COVID-19.

CDC now recommends that people who are moderately to severely immunocompromised receive an additional dose of an mRNA COVID-19 Vaccine (Pfizer-BioNTech or Moderna) at least 28 days after the completion of the initial mRNA COVID-19 vaccine series.

This includes people who have:

  • Active treatment with high-dose corticosteroids (i.e., ≥20mg prednisone or equivalent per day), alkylating agents (e.g., cyclophosphamide), antimetabolites (e.g., mycophenolate mofetil, methotrexate, azathioprine), or transplant-related immunosuppressive drugs, cancer chemotherapeutic agents classified as severely immunosuppressive, tumor-necrosis (TNF) blockers, and other biologic agents (such as tocilizumab or rituximab) that are immunosuppressive or immunomodulatory
  • Receipt of solid-organ transplant and taking immunosuppressive therapy
  • Active treatment for solid tumor and hematologic malignancies
  • Receipt of CAR-T-cell or hematopoietic stem cell transplant (within 2 years of transplantation or taking immunosuppression therapy)
  • Moderate or severe primary immunodeficiency (e.g., DiGeorge syndrome, Wiskott-Aldrich syndrome)
  • Advanced or untreated HIV infection

Do I need to stop immunosuppressants when I get the booster?

For the first two vaccinations, it has been suggested that it might be beneficial to stop certain immunosuppressants for a week or two after receiving the initial doses. This, however, is a decision that is individualized based on the severity of active rheumatic disease and the type of immunosuppression being used. Decisions on whether to stop immunosuppression must be decided between the patient and their doctor.

What about boosters for my family and loved ones that are not immunosuppressed?

Booster shots will be available for everyone beginning September 20, 2021. These shots are for individuals 12 years of age or older who received their second doses of the Pfizer-BioNTech and Moderna vaccines eight months ago or more.

 

Scleroderma Foundation Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies referenced in this document. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician for proper evaluation and treatment.

[Revised August 20, 2021]

 

[Revised August 20, 2021]

Important Guidance on COVID-19 & Scleroderma

  • August 20, 2021: COVID-19 Vaccine Q&A from the Foundation's Medical & Scientific Advisory Board
  • August 4, 2021: Guidance on COVID-19 vaccines from American College of Rheumatology
  • August 1, 2021Mask Wearing Advisory from Scleroderma Foundation CEO, Mary J. Wheatley
  • August 1, 2021: COVID-19 (Coronavirus) Information & Recommendations
  • March 21, 2020: Important Information Related to COVID-19 and Juvenile Scleroderma

Guía de COVID-19 y esclerodermia

  • 17 May 2021 Actualizaciones: Medidas importantes para el covid 19 y el uso de mascarillas
  • 1 April 2020 Información Importante Traducida al Español Sobre COVID-19 y Esclerodermia Juvenil
  • 30 March 2020 Español "COVID-2019 ("Coronavirus") Información y Recomendaciones del Comité de Asesoría Médica y Científica de la Fundación de la Esclerodermia