Patients with systemic lupus erythematosus (SLE) are feeling a significant impact of the COVID-19 pandemic. Between 20 and 150 people for every 100,000 Americans have SLE. The rate increases for women to 164 and to 406 for African Americans per 100,000.
One of the common lupus medications, Plaquenil, is being given to COVID-19 patients as a trial treatment. Interruptions are also occurring in the supply chains for this drug. This has resulted in a shortage of medications for people with SLE.
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- Continue reading to learn how SLE patients can manage this supply disruption
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Continue reading to learn how SLE patients can manage this supply disruption
What Is Lupus?
SLE is a disease in which the body’s immune system falsely sees its own tissue and organs as threats. This results in an attack on these body parts.
The immune response causes swelling throughout the body. Specific areas include the joints, skin, kidneys, blood cells, brain, heart, and lungs.
It’s often difficult to diagnose because symptoms may look like other diseases. One of the hallmark signs is a facial rash that looks like butterfly wings across both cheeks.
SLE can sometimes present after an infection. Exposure to sunlight or taking certain drugs can also act as triggers.
Standard Lupus Treatments
At this time, there’s no cure for SLE. Treatments strive to help the patient feel better and increase functionality. The three primary treatment goals are to:
- Prevent SLE flares
- Manage symptoms as they occur
- Decrease damage to organs and other problems
SLE treatment often includes a number of medications. Each patient is different and, thus, each treatment plan varies. The healthcare provider must weigh the risks and benefits of each treatment modality.
It’s key that patients with SLE follow the treatment plan to achieve treatment goals. Stopping treatment can result in flares and organ and tissue damage.
Common Lupus Medications
A combination of medications is often used to treat SLE. Depending on the patient and their current symptoms, the combination of drugs varies.
Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)
As the name describes, NSAIDS work to decrease symptoms associated with swelling. These include stiffness and pain in muscles, joints, and other tissues. Patients may take this alone or in combination with other medications.
Anti-malarial drugs, such as Plaquenil, provide long-term treatment to control SLE. Most patients take this medication for the rest of their lives. This is like their “life insurance”.
Synthetic cortisone medications help with swelling, pain, localized heat, and tenderness. This works quickly to relieve symptoms and helps during flare-ups. Yet, it can also cause several side effects.
NSAIDs and steroids alone do not provide sufficient control for SLE patients.
Often, SLE patients take medications to decrease the immune response. These medications are also used for patients who have received organ transplants. They help keep the body from rejecting the new organ.
In the same way, immunosuppressants help stop the body from attacking itself in SLE patients.
The mild male hormone, DHEA, helps treat the mild to moderate symptoms of SLE. These include hair loss, joint pain, and fatigue.
It can improve symptoms associated with cognitive dysfunction. Examples include difficulty thinking, memory loss, distractibility, and difficulty multitasking. DHEA also decreases the incidence of osteoporosis.
A relatively new type of medication includes biologics. These medicines are given intravenously or by subcutaneous injections. They provide benefits by relieving SLE symptoms.
Impact of COVID-19 on Medication Availability
University of Minnesota (UM) researchers voiced concerns that the COVID-19 pandemic will cause a shortage of medications in the U.S. Many critical medications rely on ingredients and manufacturing by other countries including India and China.
These concerns are based on findings published by the Center for Infectious Disease Research and Policy (CIDRAP). The Resilient Drug Supply Project is working to map the supply chain for critical drugs to the U.S.
CIDRAP leaders have requested information from drug companies about their current inventories. They also asked for details about their supply chains. The ultimate goal is to help prevent or decrease shortages.
One of the principal investigators from UM explained the medication manufacturing process. China makes about two-thirds of the active ingredients used to create generic drugs in the U.S. The ingredients are then sent to India to generate the final product.
The Indian government has banned the export of over 25 drugs including hydroxychloroquine. Hydroxychloroquine is the lupus Plaquenil.
Strategies for Getting Your Medication for Lupus
The Lupus Foundation of American says it’s taking steps to ensure SLE patients have access to critical medications. SLE patients, however, are finding difficulty getting their medications.
Erin Fox, an associate adjunct professor of pharmacy from the University of Utah is an expert on drug shortages. She states that four of the eight suppliers report that they have a normal supply. This provides hope, but some are still experiencing backorders.
The pharmacy state boards in Nevada, Ohio, Texas, and Idaho have imposed rules on prescriptions for drugs like Plaquenil. When the physician writes a prescription, they must include the diagnosis. If the diagnosis is COVID-19, further restrictions apply.
For example, they can only have a 14-day supply with no refills. The purpose is to stop the hoarding of these medications.
Ask your physician to write your SLE diagnosis on your prescription even if you aren’t in one of these states. You may need to get more frequent and smaller refills.
Some patients are starting to order online prescriptions. Check out online pharmacies to see if they have Plaquenil available. Their site will give you the information you need to get a prescription filled.
Most importantly, don’t ration or stop your medication. Keep looking until you find a source.
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