FORWARD is asking you for this information now as it may provide valuable information to health care providers going forward to help make decisions about how to treat patients with rheumatic diseases who get COVID-19. Our 6-month questionnaires are the mainstay of our research, but if there’s an important question that needs answering for the scientific community, we can do followup outside of this. Since this pandemic is unlike anything we’ve ever experienced, there’s a great need for timely information to share from patient experiences with the larger health/science community.
Thank you so much for taking the time to advance this crucial research! We have already published a study based on your answers, and it is being used by healthcare providers to improve the care of those with rheumatic diseases.
The short answer is that experts warn patients not to stop or change dosage of medication without calling their doctors.
The long answer is that we don’t know whether taking immunosuppressant drugs further increases the risk of catching COVID-19. But Michael George, MD, a rheumatologist and assistant professor of medicine and epidemiology at the University of Pennsylvania, in Philadelphia, says that in relation to viruses in general, limited data suggest some of the drugs used to treat autoimmune and inflammatory types of arthritis – biologics (for example, Remicade, Enbrel and Cimzia), JAK-inhibitors (Xeljanz, Olumiant and RINVOQ), and corticosteroids (prednisone) – may contribute to higher risk or severity of viral infection. A recent large study of people with cardiovascular disease found that hydroxychloroquine (Plaquenil) does not increase the risk of infection and methotrexate increases the risk of infection only slightly.
The concern with immune suppression is that the virus could replicate more freely and cause more severe or extensive disease, says Dr. Winthrop. For this reason, it’s important if you are taking these medications to contact your doctor right away if you think you’ve been exposed or are experiencing flu-like symptoms. (See question addressing symptoms.) Be sure to state that you are taking immune-suppressing drugs.
Source: Arthritis Foundation
Please speak with your rheumatologist before considering any change to your treatment plan. They are an expert on your health!
However, the following points are recommendations for clinicians by the ACR COVID-19 Clinical Guidance Task Force:
- Hydroxychloroquine or chloroquine (HCQ/CQ), sulfasalazine (SSZ), methotrexate (MTX), leflunomide (LEF), immunosuppressants (e.g., tacrolimus, cyclosporine, mycophenolate mofetil, azathioprine), biologics, Janus kinase (JAK) inhibitors and non-steroidal anti-inflammatory drugs (NSAIDs) may be continued (this includes patients with giant cell arteritis with an indication, in whom IL-6 inhibitors should be continued, if available).
- Denosumab may still be given, extending dosing intervals to no longer than every 8 months, if necessary to minimize healthcare encounters.
- For patients with a history of vital organ-threatening rheumatic disease, immunosuppressants should not be dose-reduced.
- If you are due for a refill, order if from your pharmacy now, or if you need a refill, contact your health care provider.
- If your refill is for 30 days, ask your doctor to write it for a 90-day supply. That will give you a cushion in case it’s difficult to find later.
- If your pharmacy can’t fill a full 90-day prescription due to short supply, see if you can take what’s available now and be contacted as soon as new stock comes in.
- Try to refill even if it’s too soon according to the insurer’s rules. Some insurers are waiving the transaction block when a pharmacist tries to refill the prescription before the allowed date, says Mike Ganio, a pharmacist and director of pharmacy practice and quality for the American Society for Health-System Pharmacists.
- Be sure to tell your pharmacist the reason you are taking the medication. Some states give pharmacists the discretion to decide which prescriptions to prioritize, if, for example, stock is low, says Ganio.
- If the drug is out of stock, ask the pharmacist for help locating a refill. Another location in the same chain may have it or a nearby hospital pharmacy may be able to fill it.
- Check with compounding pharmacies in your area. If the active ingredient in powder form is available, the specialty pharmacist may be able to make tablets for you, says Jenny Wai, chief pharmacist, Ohio Board of Pharmacy.
- If you believe you have been inappropriately denied a prescription fill, look up your state board of pharmacy. Most board websites have a telephone number and email address for consumer complaints.
- If your in-network pharmacy cannot fill your prescription, check with an out-of-network pharmacy. Your co-pay may be higher. If you have to pay out of pocket, save money by using a discount card or coupon from FamilyWize, GoodRx or WellRx. You enter the drug name and your zip code to get a list of pharmacies in the area and the discount cost for card users. The list does not indicate whether those pharmacies have available inventory.
- If your pharmacy and others in the area do not have any hydroxychloroquine in stock, ask your doctor for guidance. You can also report it to the FDA at email@example.com.
Please consult your physician to find out what is best for you and your treatment. Research is still very active in this area, and your healthcare provider will have the most up-to-date information for you. Currently, the only treatments approved by the FDA are “infection prevention and control measures and supportive care, including supplemental oxygen and mechanical ventilatory support when indicated”.
According to NIAID Director Anthony S. Fauci, M.D., “We urgently need a safe and effective treatment for COVID-19. Repurposing existing drugs is an attractive option because these medications have undergone extensive testing, allowing them to move quickly into clinical trials and accelerating their potential approval for COVID-19 treatment. Although there is anecdotal evidence that hydroxychloroquine (HCQ) and azithromycin may benefit people with COVID-19, we need solid data from a large randomized, controlled clinical trial to determine whether this experimental treatment is safe and can improve clinical outcomes.”
To learn more, the National Institute of Health (NIH) is beginning a clinical trial that hopes to understand whether HCQ and azithromycin truly are effective or if the treatment is no better than a placebo. This study is also aimed at determining what risks are involved when treating COVID-19 patients with these medications.
Talk with your medical provider regarding your symptoms and if they are not available, check to see if there is a local support line that has been set up.
If you develop any of these emergency warning signs* for COVID-19 get medical attention immediately:
- Trouble breathing
- Persistent pain or pressure in the chest
- New confusion
- Inability to wake or stay awake
- Bluish lips or face
*This list is not all inclusive. Please consult your medical provider for any other symptoms that are severe or concerning to you.
Call 911 if you have a medical emergency: Notify the operator that you have, or think you might have, COVID-19. If possible, put on a cloth face covering before medical help arrives.
Before making a decision about whether or not to be active outside, be sure to check the latest guidance from your local health department and community or state leaders. In most places across the United States, residents can go for a walk or run as long as they practice social distancing and good hygiene.
Going for a walk, run, or bike ride in your neighborhood can be a good way to get active, as long as you can safely maintain distance between yourself and other active neighbors. If you decide to go to a nearby park or community space, first check for closures or restrictions. Then consider the number of other people who might be there and if you’d be able to ensure enough space — at least 6 feet —between yourself and other people.
If you can’t practice safe social distancing outdoors, stay home and find ways to get active indoors. If you have to go outside near other people — like to walk your dog — wear a cloth face covering.
If you have a yard, gardening and yard work are also great ways to stay active and count toward meeting the Physical Activity Guidelines.
- Take deep breaths, stretch, or meditate. Headspace is an app for meditation, and they have free modules available.
- Take breaks from watching, reading, or listening to news stories, including social media. Hearing about the pandemic repeatedly can be upsetting.
- Take care of your body.
- Try to eat healthy, well-balanced meals.
- Exercise regularly, get plenty of sleep.
- Try a cognitive behavioral therapy (CBT) based approach to deal with anxious thoughts about the pandemic.
- Avoid alcohol and drugs.
- Make time to unwind. Try to do some other activities you enjoy.
- Connect with others. Talk with people you trust about your concerns and how you are feeling.
If you, or someone you care about, are feeling overwhelmed with emotions like sadness, depression, or anxiety, or feel like you want to harm yourself or others:
- Call 911
- Call 211 to reach your local Social Services
- Visit the Talk to Someone Now Lifeline, or call 1-800-273-8255
- Visit the Disaster Distress Helpline, call 1-800-985-5990, or text TalkWithUs to 66746
- Visit the National Domestic Violence Hotline or call 1-800-799-7233 and TTY 1-800-787-3224
The Arthritis Foundation helpline can help answer some of your common questions about financial assistance and more. Contact them at 1-800-283-7800 or visit https://www.arthritis.org/i-need-help for more ways to get in touch.
Drug manufacturers may have financial assistance programs. Visit the links below to find out more about them.
Abbvie: (Humira), (RINVOQ)
Amgen: (Enbrel)(Evenity) (Prolia)
Bristol Myers Squibb (Orencia)
Genentech: (Actemra), (Rituxan)
Janssen (Remicade), (Simponi) (Stelara)
Eli Lilly (Taltz)
Novartis: (Cosentyx) (Ilaris)
Pfizer: (Celebrex), (Inflectra), (Lyrica), (Xeljanz)
- Celebrex Patient Assistance
- Inflectra Patient Assistance
- Lyrica Patient Assistance
- Xeljanz Patient Assistance
Get more information about other patient assistance programs and ways to manage the cost of your arthritis care.
Source: Arthritis Foundation