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Medication Compliance in Young People with Lupus
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Medication Compliance in Young People with Lupus

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Dr. Phillip Kahn, a pediatric rheumatologist in New York City, discusses medication compliance in young people with lupus.

Dr. Phillip Kahn, a pediatric rheumatologist in New York City, discusses medication compliance in young people with lupus.


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  • 1. Why do I have to take medicine if I “FEEL” well?
    • Lupus can be ACTIVE even if you feel well
      • Sometimes Lupus can be “silent” but active, which is one of the reasons why patients need regular physicals and blood work.
      • Many other diseases, such as diabetes and high blood pressure, can be active and cause damage without patients feeling bad.
  • 2. Some medications are taken to PREVENT future problems
      • Some medications are started when patients feel bad. Past studies have demonstrated that it is important to continue certain medications for a period of time in order to prevent future organ damage.
      • Hydroxychloroquine (Plaquenil) has also been shown to reduce the incidence of disease flares, which is why many patients are on this medicine long-term if not for a lifetime
  • 3. What happens if I run out of my medications?
    • This should NEVER happen
      • Some medications, such prednisone can be dangerous if stopped suddenly
      • A flare of lupus can occur if medications are stopped suddenly, likely requiring MORE medication
    • It is good to call your doctor when you have one week left of medication
    • For all of your medicines you should (at least) know the following:
      • What is the medicine for, and what are the side effects?
      • What is the dose and frequency?
  • 4. How can I remember to take my medicine?
    • Some tips to remember your medications
      • Use a weekly pill box
      • Place a medication calendar on the refrigerator, which can be checked off after taking each medicine
      • Set your watch/cell phone/beeper/clock alarm as a reminder
      • Do what works for YOU. For example, if you need to take a medicine in the morning and evening, perhaps you could leave the pill bottle by your toothbrush as a reminder
  • 5. What happens if I “accidentally” become pregnant?
    • Patients with SLE can have healthy pregnancies
    • It is important to PLAN the pregnancy when one is ready, in order to discuss with your rheumatologist in advance whether certain medications need to be changed.
      • Certain medications may be harmful to a developing fetus
  • 6. Pregnancy can be difficult for some Lupus patients
      • Patients may have a flare of Lupus when pregnant
      • Some Lupus patients may have certain antiphospholipid antibodies which may make it more difficult to have a successful pregnancy
      • Some SLE patients carry certain autoantibodies that are associated with increased risk to the fetus.
      • Patients with increased likelihood of having more difficulty with their pregnancy should be followed by a high-risk obstetrician