Getting the most from your lupus medications
When Ruth Harris, 26, was diagnosed with lupus in June 2004, she found it hard to accept. “The more I started researching it, the more I was in denial.”
When she learned about all her medications, it got worse. “I hated opening my medicine cabinet and seeing the pile growing. I thought, ‘There’s no way this is my life, and that I have to take meds every day to function.’”
Harris, a Riverside, CA, mother of three, tried ignoring her doctors’ advice, sometimes skipping doses altogether. Then she had a severe flare. “I ended up on life support,” she says. “I realized I shouldn’t even toy with the idea of switching my meds around or not taking one.” As Harris discovered, keeping track of your medications, and taking them correctly, is critical.
Follow guidance on when and how to take your pills
“Some medications need to be taken more than once a day because of the timing and duration of the drug effects,” says Sasha Bernatsky, MD, assistant professor of rheumatology and clinical epidemiology at McGill University Health Centre in Montreal. “Others should be taken at night, because they may cause drowsiness. Some should be taken with food, others on an empty stomach to optimize absorption.”
Prednisone (a corticosteroid) and methotrexate are best taken at specific times of day. “I tell people to take prednisone first thing in the morning, with something in their stomach,” says Mary Anne Dooley, MD, MPH, associate professor of rheumatology and immunology at the University of North Carolina’s Thurston Arthritis Research Center.
“The body’s natural biorhythm is to have the highest levels of cortisol (the active ingredient in prednisone) in the morning. If you stay with your body’s natural rhythm, you’ll generally have fewer side effects. And it can irritate the stomach and doesn’t taste good—you want to take it with food.”
Likewise, an osteoporosis treatment like Boniva® must be taken with a full glass of water on an empty stomach—even coffee can cut absorption by 60 percent—so this type of medication is best taken in the morning; you also should remain upright for 30 minutes before eating or drinking anything else, to avoid irritation of the esophagus.
Minimize interactions and side effects
A weekly dose of methotrexate can cause unpleasant side effects, so Dooley recommends taking it when you have a couple of days off; for example, on Fridays, if you work during the week. “If you don’t feel 100 percent afterward, you have the weekend to get through it,” she says. It’s also important to avoid alcohol while taking methotrexate.
For some medications, time of day is less important than consistency. Dooley says, “Many immunosuppressants must be taken as two doses per day, with at least eight hours between. If you’re late taking a morning dose, you should still take the second dose at the right time.”
Dooley says time of day also matters less with Plaquenil® (hydroxychloroquine), but it’s best taken with food. Non-steroidal anti-inflammatories like ibuprofen and naproxen can give people heartburn or upset stomach, she says, so take them at least two hours before you lie down at night or with medications that protect your stomach. If you’re on an infusion drug like Cytoxan®, ask your doctor about anti-nausea medications to ease side effects.
Bernatsky notes that some drugs interact with each other. “For example, you shouldn’t take calcium supplements within two to three hours of taking thyroid medication, as [calcium] can interfere with proper absorption,” of thyroid medication, she says.
Tips for managing your medication regimen
Tremia Appling, 41, of Oklahoma City, OK, says, “You really need to be good friends with your pharmacist, who can help you out.” Diagnosed with lupus seven years ago, Appling now takes 24 different medications. “There have been times when I think, ‘I’m tired of all this medicine. I’m tired of the side effects; they’re horrible.’
I have tried to cut down, under my doctor’s supervision, of course, but even then, the lupus is far worse than the side effects.” (Appling chronicles her experiences with lupus via a video blog on YouTube. You can find her blog by searching “Treappling1” on youtube.com.)
Appling’s husband, Dwayne, helps her keep track of her meds. “We use a pill box with four boxes in it per day,” Dwayne says. “I fill up the box at the beginning of the week so we know if she’s run out of something. It also helps us see if she misses a dose.”
Appling keeps a journal to record side effects and dosage, and Dwayne created a spreadsheet to keep track of her medications. “The list has the drug, the dosage, the frequency, the time that you take it, who prescribed it, and what it’s for,” he says. “At the bottom are her name, address, number, rheumatologist, allergies, and pharmacy. It’s all in one place, in case we have to go into the ER or to the doctor.”
Enlist support (if you want it)
Delesha Carpenter Miller, MSPH, PhD a fellow at the University of North Carolina’s Thurston Arthritis Research Center, says support from a friend or family member can help, provided it’s the right kind.
“There’s not always 100 percent agreement between the type of support people want and the type offered. Unwanted support can feel like a loss of autonomy,” Miller cautions. The important thing is keeping communication lines open. “It’s a delicate line between being reminded and being nagged, so it’s up to you to communicate how often you would like to be reminded about medications.”
Harris says communication and organization were part of her coming to terms with her lupus. “At the beginning, I went on vacation, and I completely forgot my pills. I ended up in a really bad flare. Now it’s the first thing I pack: pills, then underwear.”