What to Do with a Patient Who Won’t Listen | Systemic Lupus Erythematosus (SLE)

HL was 19 years old when she was transferred from a pediatric rheumatology practice into our adult practice.

Her medical and social history was messy. In the foster care system since the age of 12 years old, HL had been diagnosed with systemic lupus erythematosus (SLE) at age 10. She had serious trust issues, tended to often miss scheduled appointments, and would then only receive a check on her SLE when she showed up in the emergency room with a disease flare.

Given her history, HL’s social worker set up a meeting with her pediatric and adult rheumatology teams, as well as HL, prior to her transfer to our practice. Unfortunately, HL did not show up to the meeting.

I first met HL 6 months after this unsuccessful meeting when she came to our office for the first time after calling for an “urgent” appointment. It was an inauspicious beginning. For starters, HL wasn’t interested in waiting to see a rheumatologist—she just wanted to have bloodwork done quickly so she could be in and out of our office. I tried talking to her about her current medications, but she shrugged me off, telling me, “I’m not taking any.” I asked HL why and was told that she had been homeless for the last 3 months and had run out of insurance anyway. I put in a call to our social work team to see if there was anything they could do that might help.

HL’s attitude was a challenge. She was equal parts demanding and despondent with an “I don’t care” attitude about her disease and life in general. I knew that this was not the first time HL had been homeless, and she seemed resigned to this being her long-term fate.

HL’s blood work showed large amounts of proteinuria, severe anemia, and extremely active SLE. Fortunately, our social work team was able to get her re-instated on Medicaid so that she could again begin to receive treatment.
Not surprisingly, we didn’t hear anything from HL for the next 2 months. She popped back onto our radar after coming to the ER with a severe hypertension headache. HL told the ER team that she wasn’t taking her medications because there were just too many of them. I received a call to perform a medication review and to try to assist HL with her issues.

When we went through her prescriptions—and remember that this was a 19-year-old—it was stunning. We figured out that HL was supposed to take 23 pills a day—6 tablets of mycophenolate mofetil, 2 tablets of hydroxychloroquine, 3 tablets of prednisone, 6 tablets of methotrexate, 1 folic acid tablet, several blood pressure medications, 2 calcium tablets, an osteoporosis prevention pill, and a birth control pill. Personally, I sometimes forget to take my daily multivitamin so I can’t imagine how HL, with all of the issues in her life, could realistically be expected to take 23 pills on a daily basis.

My first step was to get HL 2 pill boxes and see if I could at least make it a little easier to manage her medications. I met with HL’s rheumatologist to go over her medication regimens. We went on a cutting spree, switching the calcium and folic acid supplements into a single prenatal vitamin. We referred HL to a gynecologist so that she could receive an implantable intrauterine device and discontinue her use of daily birth control pills. We found combination therapies for her blood pressure medications. We exchanged the 6 daily mycophenolate pills for the liquid form. At this first pass, we managed to take HL from 23 daily pills down to 13, which seemed far more palatable.

Our social work team and I set up weekly appointments with HL over the course of the next month, which she fortunately actually showed up for. We taught her what each of her medications were for, when they should be taken, what side effects were possible, and what she should do if she forgot to take any. We found a simple application for her phone where we uploaded the full medication list and set reminders to cue HL to take each medication.

Little by little, our team was able to build mutual trust with HL. I think she enjoyed the personal attention and genuine concern we all had for her. She became a model patient, showing up with her pill boxes every 4 weeks and telling us about any troubles she was having with her medications. She even took her struggles to social media, posting pictures of her pill box and recording videos where she talked about the struggles of a young woman with SLE.

HL’s turnaround has been remarkable. SLE is a very challenging disease to treat—even after the best of our efforts, HL still needs to take 13 pills a day to keep her disease at bay. There are some options for patients like HL with a long list of medications, including injectables, infusions, liquids, and combination pills that can help cut down on the daily requirements, but it can still be somewhat overwhelming. Medication nonadherence is a common problem in patients with SLE, and providers need to be vigilant in checking in with patients to make sure they are not letting their disease bubble untreated. Building trust with SLE patients like HL doesn’t happen overnight, but by being open and assessing our patients’ social as well as physical well-being, we can help to tame this difficult disease.


Monica Richey, NP, MSN, ANP-CP/GNP is a nurse practitioner at the Division of Rheumatology at Northwell Health in New York, New York, and is the Advocate Member At-Large for the Rheumatology
Nurses Society.