Information for Pemphigus and Pemphigoid Patients Related to COVID-19
This page was last updated on June 23, 2020.
As news of coronavirus disease (COVID-19) changes hour by hour, one fact remains constant: The IPPF is dedicated to our community during this difficult time, and we are here to provide support and information. We are working hard to keep abreast of the situation and notify you about updates regarding the necessary precautions and recommendations to keep you safe during this pandemic. We will continue to update information on this page as it becomes available.
As always, we are listening to you during this time. When possible, we will try to answer general questions regarding the unique needs of pemphigus and pemphigoid patients. However, if you have specific questions or concerns about your condition, we recommend that you contact your physician.
Face coverings and masks:
The IPPF follows the evolving recommendations for from the United States Centers for Disease Control and Prevention (CDC) in regard to masks and cloth face coverings.
From the CDC website: CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies) especially in areas of significant community-based transmission.It is critical to emphasize that maintaining 6-feet social distancing remains important to slowing the spread of the virus. CDC is additionally advising the use of simple cloth face coverings to slow the spread of the virus and help people who may have the virus and do not know it from transmitting it to others. Cloth face coverings fashioned from household items or made at home from common materials at low cost can be used as an additional, voluntary public health measure.
The cloth face coverings recommended are not surgical masks or N-95 respirators. Those are critical supplies that must continue to be reserved for healthcare workers and other medical first responders, as recommended by current CDC guidance.
The IPPF maintains that the best way to protect yourself in the short-term is to stay at home to the extent possible, practice social distancing, and avoid touching your face/wash your hands frequently if you have to go out (and don’t go out if you are sick). Examples of specific circumstances where masks can be worn are if patients have flu-like symptoms and are headed to the doctor to be tested, or if patients are in the middle of rituximab infusions and have to complete their treatment cycle. Guidances are constantly evolving, but we must continue our best efforts to “flatten the curve” of infections that will otherwise overwhelm the health care system.
Questions Related to Pemphigus and Pemphigoid
In response to some common questions we’ve received recently, the IPPF Medical Advisory Council has provided the following answers:
- What precautions should patients with open P/P lesions do in light of COVID-19?
Direct spread through the skin is not a known source of transmission for COVID-19. Keep lesions clean and covered if around others.
- If not on any treatment, does simply having an autoimmune disease like P/P make you more susceptible to this coronavirus?
Pemphigus and pemphigoid patients who are not receiving immunosuppressive therapies are not known to be at greater risk for COVID-19.
- Does using topical treatments make you immunosuppressed?
Not usually. However, if the dosage is more than 20g of a class I steroid (clobetasol or betamethasone, etc.) some steroid systemic absorption occurs. It is possible this absorption can make a patient slightly immune-suppressed.
- How long does it generally take for the following medicines to get out of a person’s system and for their immune system to return to normal levels:
- Rituximab: The formal guidance is typically 1 year, although there is some variability in that response. We know from the published literature that many patients start to make new immune responses by 5-6 months after rituximab treatment.
- Corticosteroids (systemic prednisone or prednisolone): Within days to weeks, but these cannot be arbitrarily stopped and will need to have the dose weaned properly due to adrenal suppression.
- Class I Topical Steroids (Clobetasol/Betamethasone): These don’t affect the systemic immune system unless ~20g or more are applied daily. Even if high doses are used, these would “wash out” in days to weeks as above.
- Azathioprine/mycophenolate mofetil: These take 3 months to “wash out” of a person’s system.
- Cyclophosphamide: Cyclophosphamide should presumably take 3 months based on mycophenolate mofetil/azathioprine (MMF/AZA) data.
- Cyclosporine: Cyclosporine should presumably take 3 months based on MMF/AZA data.
- Dapsone: Dapsone doesn’t suppress the immune system in a way that would be expected to be problematic with COVID-19, and it “washes out” in a week or two.
- IVIg: IVIg doesn’t suppress the immune system
- Is IVIg therapy better than nothing?
Yes, there were randomized double-blind clinical trials of IVIg performed in Japan that showed that it was modestly effective at improving disease activity in bullous pemphigoid and also was beneficial in pemphigus. The main advantages of IVIg right now are that it is one of the only therapies for P/P that does not suppress the immune system. Additionally, it can be given by home infusion if your insurance approves that form of therapy.
- Does Rituxan put you more at risk of contracting a virus than being on high doses of prednisone?
Rituximab does generally increase risk of viral infections. However, a randomized controlled trial published in Lancet (2017) showed that rituximab is better at controlling disease and resulted in a lower rate of infections compared to high-dose prednisone alone, so this issue would best be left to an individualized discussion with your doctor to determine the risk of disease versus the risk of treatment.
- Rituximab treatments have been postponed. What can be done in the meantime?
IVIg could be considered if the disease is significant, or topical steroids and other non-immunosuppressive measures if that is sufficient to control symptoms. However, severe disease should most likely still be treated, as the risk of hospitalization from severe disease could be worse than treating now to get disease symptoms under control and then self-isolating at home to avoid the risk of infection. Speak with your employer and doctor about flex hours or work-from-home options if immunosuppressive therapies are used.
- I work in a hospital where we are getting COVID-19 cases, and I’m on treatment for P/P. Should I stay home from work/take leave?
You may be at higher risk for severe manifestation of COVID-19. You should speak with your supervisors about opportunities to work at home or in isolation.
- Does being on long term, low-dose prednisone make COVID-19 symptoms come slower?
We do not know the answer to this question yet.
- I’ve been in remission, but now seem to be having a flare. Does taking medication put me at high risk for COVID-19?
Many oral and IV medications may increase the chance that you will have a more severe course of COVID-19. IVIg is likely an exception.
- When a vaccine for COVID-19 is available later in the year or next year, would rituximab’s effects on B cells affect the efficacy of the vaccine?
While we do not have solid data, it is reasonable to assume that rituximab would decrease the efficacy of a COVID-19 vaccine, particularly if the vaccine is given in the first few months after rituximab.
- When should the vaccine be given in relation to the courses of rituximab? How many months before or after?
These issues will affect when the patients should get their next infusion. We do not know for certain, but it is reasonable to think that the ideal time to vaccinate for COVID-19 would be at least 4-6 months after rituximab and at least 1 month before rituximab.
- What process should an undiagnosed person follow if they suspect they have a bullous disease?
Call their local dermatology provider. Avoid the ER if possible. (NOTE: If you need assistance locating a dermatology provider in your local area who is experienced in dealing with pemphigus and pemphigoid, contact us.)
- Are there extra precautions that patients should observe as states begin to reopen?
Different states may be recommending different levels of precautions. Wear a mask or face covering in public; stay 6 feet away from others; wash your hands or use hand sanitizer if you are out in public spaces and avoid touching your face, nose, eyes, and mouth with unwashed hands; wash your hands immediately after returning to your home. Avoid mass transit if possible. Work places may offer flex hours or work-from-home options to help avoid “rush hour” when many commuters are using mass transit. If you cannot work from home or avoid mass transit – follow the guidelines above (face covering, physical distancing to the best extent possible, avoid touching your face with unwashed hands while commuting). If you develop fever, chills, cough, shortness of breath, sudden loss of taste or smell, headache, sore throat, muscle pain, call your primary care doctor for guidance and remember to tell them if you are on immunosuppressive treatments.
- Should patients (whether on or off treatment) go out into society and businesses as they begin to reopen, or should we stay home or request letters from doctors to continue to work from home until we know if there will be a big uptick in cases?
Patients who are off treatment have the same risk from infection as a non-pemphigus or pemphigoid patient. Patients who are on immunosuppressive therapy have greater risk of infection, as well as a more serious course of infection. Flex hours or work from home would be prudent if there is a resurgence of COVID-19 in your community. Speak with your employer and doctor about options.
- What precautions should be exercised if a member of the household has to work outside of the home?
Greater precautions are recommended if you are immunosuppressed and a member of the household works in a high-risk environment (for example, health care or a workplace that requires contact with multiple individuals.) Precautions the household member should consider include wearing a mask, frequent hand washing or use of hand sanitizer, avoid touching the face with unwashed hands while at work, washing their hands immediately after they return home, and surveillance for any of the symptoms of COVID-19 above.
- World Health Organization: Coronavirus disease (COVID-19) Updates
- EURODIS: COVID-19 Resources
- EURORDIS: Open letter to policy makers: Recommendations to protect people living with a rare disease during the COVID-19 pandemic (PDF)
- European Reference Network ERN-Skin: Patients with rare skin diseases and COVID-19 virus (PDF)
- Australian Ministry of Health
- New South Wales: Coronavirus FAQ
- Government of Western Australia Department of Health: COVID-19 Information
- RACGP: Coronavirus (COVID-19) Information for GPs
- Queensland Government: Novel coronavirus (COVID-19)
- South Australian Government: Coronavirus disease (COVID-19)
- Victoria State Government: Coronavirus disease (COVID-19)
- Association Pemphigus Pemphigoïde France: Informations sur le COVID-19
- Gouvernement: Informations Coronavirus
- Associazione Nazionale Pemfigo Pemfigoide Italy: Tutto su COVID-19
- Associazione Nazionale Pemfigo Pemfigoide Italy: INFEZIONE DA CORONAVIRUS
- Japanese Pemphigus and Pemphigoid Foundation: COVID-19 information
- Osaka City University: Policy on New Coronaviruses
- Ministry of Economy, Trade and Industry: Support Measures for Companies Concerning the Impacts of the Novel Coronavirus Disease
- Netwerk Nederland Pemphigus en Pemphigoid: CORONA en auto-immuun blaarziekten (AIBD) en aanverwanten
- British Association of Dermatologists: Dermatology Advice Regarding Self-Isolation and Immunosuppressed Patients: Adults, Paediatrics and Young People
- GOV.uk: Coronavirus (COVID-19): what you need to do
- GOV.uk: Public Health England
- NHS: COVID-19 Symptom Checker
- British Association of Dermatologists: Skin Support
- National Institute for Health and Care Excellence: Guidance
- Centers for Disease Control and Prevention (CDC):
- Substance Abuse and Mental Health Services Administration (SAMHSA): Disaster Distress Helpline: 1-800-985-5990 and TTY 1-800-846-8517 -or- text TalkWithUs to 66746 (additional information on the SAMHSA website)
- National Domestic Violence Hotline: 1-800-799-7233 and TTY 1-800-787-3224 or chat on their website
- National Organization for Rare Disorders (NORD): Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community
- EveryLife Foundation: COVID-19 Resources
- USA.gov: Find your State Health Department
- Medicare.gov: Medicare and Coronavirus Information
- Centers for Medicare and Medicaid Services (CMS): Coronavirus (COVID-19) Partner Toolkit
- U.S. Food & Drug Administration (FDA): Coronavirus Disease 2019 (COVID-19)
- Global Genes: Coronavirus (COVID-19) Resources
- National Institutes of Health (NIH): Coronavirus (COVID-19) Information
- U.S. State Department: Information for Travelers
- American Public Health Association (AHPA): Get Ready Fact Sheet
- American Academy of Dermatology (AAD):
- National Health Council (NHC):
- Mental Health America: Mental Health and COVID-19
- Center for Chronic Illness: Programs and Services
- Emory University School of Medicine, Department of Dermatology: Patient Information
- The Organization for Safety, Asepsis, and Prevention (OSAP) and DentaQuest: Best Practices for Infection Control in Dental Clinics During the COVID-19 Pandemic
The IPPF provides peer support and information to all those affected by pemphigus and pemphigoid. Our community is strong and we are all in this together. If there’s anything we can do to support you, contact us at firstname.lastname@example.org.