Updated: May 26
The comments below include information from Steve Taylor’s Sjogren's Foundation Town Hall as well as the April 3rd CDC-AARDA presentation. If you were not able to make the Town Hall, or you would like to replay the call, simply use this link - 4/2/2020 - COVID-19 & Foundation Update. Steve’s presentation was very good. I highly recommend listening to it.
We will not have data for some time that shows whether Sjogren’s or other autoimmune disease patients are at increased risk of COVID-19. This is a new disease; we are learning as we go. Steve did comment that you should be especially cautious if you have lung disease or are taking immune-suppressing drugs. My concerns about other Sjogren’s-specific risk factors are discussed in my March 25, 2020 blog post.
The clear and consistent message from the Sjogren’s Foundation and the CDC is to act as if you are at high risk.
This means that household members should be extremely cautious too. The virus is widespread. It is highly contagious. It can be spread by people who do not have symptoms.
Does Hydroxychloroquine (HCQ, aka, Plaquenil) help prevent or treat COVID-19?
No one knows for sure. At this time, the evidence is weak and inconsistent that HCQ will help prevent or treat COVID-19. More studies are in progress that should be able to answer this question over the next few months. If you are already taking HCQ, try to continue the drug if you can obtain refills during the drug shortage. HCQ is an immune modulator, not an immune suppressant, and is unlikely to increase your risk for infection.
Steve Taylor is working hard with the FDA, ACR, and others to advocate for adequate HCQ supplies for ongoing use. Do contact the Sjogren’s Foundation if you are having trouble refilling your prescription so he can use this information to advocate for us.
Have a plan if you do get sick.
1. Consult with your doctor and call ahead before going to the clinic or hospital for any medical care.
2. Try to determine a plan if you need a caregiver and follow the CDC guidelines for taking care of someone at home. This important information will help minimize the spread of the virus in the household.
TIP: Print these CDC guidelines in advance, and share them with the people in your household.
3. Remember that friends and family cannot visit you in the hospital. Consider packing a Go Bag that includes essential self-care products and medications that the hospital may not carry.
4. Include a summary list of medical conditions and your current medication regimen in your Go Bag. Be sure to list ALL of your Sjogren’s complications.
5. If you have not done so, complete your Advanced Health Care directive. This will allow a health care agent to speak on your behalf about medical decisions if you are unable to.