This is an exceptionally challenging time for patients and our community as the COVID-19 outbreak continues to spread. Isolation, fear, and anxiety are common and valid emotions especially when questions unique to the health needs of patients with vasculitis remain largely unanswered.
The VF has received a tremendous number of questions from our community. We compiled all the questions we received and sent the most-frequently asked to our physician-investigators specializing in vasculitis for answers. We are fortunate that our community has such passionate and dedicated medical experts willing to respond to these questions.
Please keep in mind that our vasculitis experts answered these questions to the best of their current medical knowledge. Information is rapidly changing as the situation evolves.
The VF, and our medical experts consulted, cannot provide individualized medical advice. The information provided is for general informational purposes only and is not intended to take the place of a consultation with your health care provider. If you have concerns about your health or treatment, please contact your health care provider directly.
The following responses were provided by:
Tanaz A. Kermani, MD · Director of the Vasculitis Program, University of California, Los Angeles (UCLA)
Jason M. Springer, MD · Director, University of Kansas Vasculitis Clinic, Kansas City, Kansas
What are the risks of COVID-19 to people with vasculitis?
The specific risks of COVID-19 in people with vasculitis are yet to be determined. We suspect our patients are at higher risk of infection due to immunosuppression used to manage vasculitis. So far, we do not know whether the risk differs based on the type of immune-suppressing medication someone is taking. We also do not yet have data on the clinical course of patients with vasculitis who develop infection with COVID-19.
All patients with vasculitis (especially those on treatment) should consider themselves at high risk. They should take all the recommended precautions recommended by the Center for Disease Control (CDC) to minimize exposure.
What should I do if I feel sick? How can I tell between my symptoms of vasculitis and potential coronavirus symptoms?
The symptoms of COVID-19 are fevers, symptoms of a cold (cough, runny nose, shortness of breath), and, in some cases, diarrhea. Keep in mind our patients may not have a high fever because of medications they are taking. Anyone who develops these symptoms should contact their health care provider for advice and information on evaluation and testing. Given the highly contagious nature of COVID-19, we are asking patients with symptoms of infection to call their health care provider’s office before going in. This way the health care providers and office staff can prepare and take appropriate precautions. However, if you have symptoms like worsening shortness of breath, difficulty breathing, you should seek medical attention immediately in the ER.
Even under normal circumstances, it can be challenging to distinguish infection from inflammation. Usually symptoms that get better on their own within a few days are more likely to be infection. Sometimes, vasculitis can also flare with infection.
Dr. Kermani remarked, “I always tell patients, if they have symptoms, they should contact their doctor to assist in evaluation and figuring out what is going on. The burden of determining whether this is vasculitis or infection should not be placed on the patient.”
Should I stop taking my medications if I have vasculitis and am concerned about COVID-19?
Please do not stop any medications before contacting your doctor. If you are concerned about your medications and the risk of infection, you should discuss this with your doctor. They can advise you on what is best for you because they know your vasculitis history. If you are on infusion medications and are scheduled for an infusion, check with your doctor whether you should proceed. While we are all concerned about the risk of this infection, we are also concerned about relapses or flares of vasculitis from stopping or lowering medications. If this occurs, you will be at risk for complications from active vasculitis but your doctor may need to put you on more immune-suppressing medications like high-dose steroids, etc. to manage the vasculitis.
What would you like to say to the patient community you care for during this crisis?
Be calm but also take the warnings seriously. It is important for you to take care of yourself and ask for help if needed. Please follow the precautions recommended by the CDC, and, recommendations from your individual state/region.
- Practice social distancing, minimize being in public places, and practice good hand hygiene.
- Avoid any sick people and contact your doctor immediately if you are sick.
- Follow your local guidelines about being outside, always practice social distancing.
- Seek support and reach out to your doctors/psychologists if you are having symptoms of depression or anxiety.
- Be patient with the changes that may be occurring in your health care providers’ offices (e.g. appointment cancellations, changing visits to phone or video visits), including in some cases delays.
This is a dynamic and evolving situation. While your specialists may not have all the answers you seek, we are certainly here to support you and take care of you. If you have questions or are having any issues, please reach out to your doctors.
What should patients do if they are concerned their medications will become scarce?
The reports of the potential benefit of the drug Hydroxychloroquine (Plaquenil) for treating COVID-19 symptoms is causing access challenges for patients. While this drug is primarily used to treat lupus and rheumatoid arthritis, it is also used to treat certain forms of skin vasculitis. We are already getting reports of rheumatology patients on this medication facing issues getting access to refills. The American College of Rheumatology is already working on access issues for our patients. It should be noted that at this time there are no proven medications for COVID-19, and data of its potential benefit for this infection are limited. Also, the studies were in people with infection; not in the prevention of infection. There are several ongoing trials. Patients who are on hydroxychloroquine should still take appropriate precautions outlined above. We will provide additional information as it becomes available. If you have further questions, or are experiencing issues with getting your medications, please contact your physician.
You can access more information and resources about COVID-19 HERE.