This page was last updated on April 3, 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.
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:
- Is it advisable for patients with P/P to wear masks?
P/P patients should not routinely wear masks (exceptions listed below). Currently there is a shortage of masks and we need healthcare workers treating COVID-19 patients to have access to these precious public health resources until more masks become available. The best way to protect yourself in the short-term is to stay at home to the extent possible, practice social distancing (or “distant socializing”), 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 is 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 what we do in the next 2 weeks in particular will have the most effect on “flattening the curve” of infections that will otherwise overwhelm the health care system. The CDC guidelines for use of personal protective equipment are listed here.
- What precautions should patients with open P/P lesions do in light of COVID-19?
Nothing new, just try to 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?
If a patient is not on treatments, there is nothing that should make for greater risk unless there are open wounds on an exposed area.
- 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?
There was a study done by Pascal Joly (Lancet 2017) showing that rituximab is safer and more effective than high-dose prednisone. In general, this is difficult to answer as it depends on the dose of prednisone the patient would need to control their disease. So this 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 waiting until someone needs hospitalization is far worse than treating now to get disease symptoms under control and then self-isolating at home to avoid the risk of infection (as most people are doing now anyway).
- 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 could 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 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. Stay away from the ER. (NOTE: If you need assistance locating a dermatology provider in your local area who is experienced in dealing with pemphigus and pemphigoid, contact us.)
- 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
- 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): Coronavirus (COVID-19) Information
- Centers for Disease Control and Prevention (CDC): Stress and Coping with the Pandemic
- 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) – Statement on Biologics (PDF)
- American Dental Academy (ADA) – What Constitutes a Dental Emergency? (PDF)
- National Health Council (NHC): Coronavirus Preparedness for People with Chronic Diseases
- National Health Council (NHC): Coronavirus: Resources, Flu Vaccinations, and more
- 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 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 email@example.com.