Medications are very important in helping you gain control of your lupus disease activity and are often needed in the long-term which can range from years to the rest of your life. By working with your rheumatologist, you can find the best and safest medication regimen that stops your active disease so that you do not suffer from permanent damage. The goal is to get back to how you felt before you developed lupus, or as close as possible to this state.
We know that ongoing disease activity and damage is bad for your health and can lead to many other problems like heart disease, thinning bones (eg. osteoporosis) and organs that do not function properly (eg. the kidneys).
Medications scare many people with lupus. If you search them up on the internet, they may sound very dangerous. Sometimes you might have conversations with others who have heard about significant side effects and discourage you from taking these medications – this can include other health care practitioners as well, which can be very confusing.
Education about the truths of these medications can help you make an informed decision and hopefully align your personal views with your physician.
Here are some suggestions to help you understand how to manage your lupus with medications:
- Your lupus healthcare provider wants to help you and understands how overwhelming the diagnosis can be.
- Remember the principle of trying to calm the disease activity down to prevent damage.
- Glucocorticoids (also known as steroids) (eg. prednisone, methylprednisolone) are often use in a pill, intravenous or even topical (cream) form to quickly bring down the disease activity.
- Long-term use of glucocorticoids can carry significant side effects.
- Medications which are not steroids (steroid-sparing) can be used to help keep lupus disease activity quiet to reduce long-term exposure to glucocorticoids.
- Non-glucocorticoid medications can go by several names including: immunosuppressants, disease modifying anti-rheumatic drugs (DMARDs), biologics, and/or steroid-sparing agents.
- Sometimes, the term chemotherapy is used when referring to medications used for people with lupus. This sounds scary because chemotherapy is used for treating cancer patients. While some medications used for cancer patients can be used to treat lupus, the way these medications are used and the dosing needed is very different between cancer and lupus patients. The best way to understand this difference is to ask your doctor.
- Steroid-sparing medications are typically started while you are already on glucocorticoids as these medications can take weeks to months to work. The glucocorticoids are tapered off over days, weeks to months and rarely years.
- On rare occasions, lupus patients need to stay on a lower dose of glucocorticoids indefinitely.
- Antimalarial medications (eg. hydroxychloroquine (also known as Plaquenil)) are the anchor drug for lupus. Unless there is a specific reason like side effects not to take it, this medication is prescribed for the majority of lupus patients with mild to severe disease.
- For those who are or wish to become pregnant and/or breastfeed, certain medications are safe and certain medications NOT safe. The best way to understand this is to speak to your lupus healthcare provider.
Please see the following websites for comprehensive medication information.