While lupus is a life-long condition, there are many treatments available to help manage your symptoms. These treatments can stave off flare-ups and protect your body’s organs. Some ease symptoms like fatigue, joint pain, and swelling. Others curb medication side effects.
If you have severe or life-threatening complications of lupus, you’ll need intensive, immediate treatment known as induction therapy to bring your symptoms under control. Afterward, you’ll have less intensive maintenance therapy to keep them away.
Yet treatments can fail, for almost as many reasons as there are therapies. People react differently to a treatment. Getting older changes how drugs take effect. Side effects and distrust of drugs can cause some people not to stick to their prescribed regimens.
How Do Side Effects Affect Lupus Treatment?
Corticosteroids such as prednisone are widely used to help manage swelling related to lupus. But steroids can cause a range of side effects, including how you look.
Visible effects of long-term corticosteroids use can include having a rounder-looking, “moon-shaped” face, weight gain, and bruising. If you’re uncomfortable or unhappy with these changes in your appearance, you may drop out of social contact to sidestep attention and questions. Or you may stop taking your medication.
How Do Lupus Treatment Needs Change With Age?
As you grow older, the way your body processes a drug, even one you’ve been on for a long time, can change. For example, the medication might linger in your body for longer than before. It’s possible that you need a lower dose, or even a different medication. Certain drugs are less safe for older people, too. Your provider might adjust your dosage or prescribe something else.
Also, the number of medical conditions you have can go up as you age. Some new-to-you meds might clash with others you already take. It’s key to know how meds for your other health issues will work with your lupus treatment. Let your health care provider know about other medications you take, or speak to your pharmacist about your medications.
Results Don’t Appear Right Away
Hydroxychloroquine is an antimalarial drug commonly used to treat lupus. It helps fend off flares. It also has side effects like some other drugs. But it takes longer to kick in, so you might feel it’s not working and stop taking it.
Whether or not you feel a drug is effective is key to whether you stick with it. Frequent follow-ups with your doctor can show progress and keep you on track with your treatment plan.
Also, DMARDS (disease-modifying anti-rheumatic drugs) can take a few weeks to a few months to take effect. Since you need to take them over a long period to reduce the effects of an overactive immune system, it’s important to stay with them. Your doctor might cut back on your dosage once your condition is under control. If you use DMARDs with steroid tablets, you’ll need regular blood tests to track how they’re working and note the impact on your body.
Why Do People Stop Taking Their Lupus Treatment?
It’s not uncommon for people with lupus to stop following the treatment plan their doctor prescribes. There are many reasons for this, among them:
Mistrust of medicine. In a study of how medical beliefs play into how people stay with treatment, minorities in particular expressed beliefs that drugs are overprescribed and harmful. In another, 71% of white people with lupus SLE (systemic lupus erythematosus, the most common kind) said they stick to their treatment plan, but 44% of nonwhites -- including Black, Asian, and Hispanic people -- said they didn’t. Whites who didn’t stay with treatment tended to report concerns about specific meds and the burdens of their regimens -- not wariness of treatment as a whole -- as their reason.
In a separate study of racial disparity and compliance with prescribed lupus treatments, the adherence rate for Black people was just 30%. This was especially true with mycophenolate, a DMARD that protects your joints and organs, including your lungs, kidneys, and blood vessels. With this med, only 26% of Black patients stayed with the treatment. The study reports that part of the reason may be that a mycophenolate prescription requires access to specialty pharmacies. It also has complex and demanding dosage instructions that may be difficult for people to follow.
Poor communication with providers. Some Black people with low rates of sticking with their treatment have reported that they have few “compassionate and respectful” interactions with their providers. This brought on anxiety and other negative feelings about the drugs.
Researchers believe that treatment approaches might work better if they were better tailored to race. This could include improving patient-provider communication and a review of mental wellness for African Americans. There’s a lot at stake; the same study found people who failed to stick with treatment had higher damage scores and needed more acute care service.
For some people, the problem is a low level of comfort with the medications themselves. Some subjects in a small study said they didn’t get the chance to fully understand their treatment plans and the meds prescribed, or talk about other options. They reported fear and anxiety about their futures, and said their providers showed a lack of optimism. Many worried about both short- and long-term side effects of drugs, often fearing they’d be worse than those they were already living with.
New Therapies Are Slow to Be Approved
There’s no shortage of drugs being studied for treatment of lupus, including biologic drugs like Blisibimod, which is in the final stages of development. Biologics are engineered to target specific parts of your immune system. Doctors use them to tame the autoimmune process in lupus.
There’s also no guarantee the drugs in clinical trials will be approved and hit the market in the long run. Clinical trials of any new drug can last more than 15 years. It also takes years to track side effects and how they affect all kinds of different people. Still other drugs might be FDA-approved, but researchers haven’t studied them enough to know how they may affect lupus.