Ringing the Bell of Hope for Our Patients

In October 2017, I met JP, a 66-year-old female patient, for the first time.

During our initial meeting, JP reported that she had been recently seen by a new primary care doctor who then referred her to my rheumatology clinic thinking she had rheumatoid arthritis (RA) and neuropathy.

At our initial visit, JP reported symmetrical pain in all her joints that was worst in her hands and feet. Her chronic pain had started in her neck about 2 years ago, later radiating through the rest of her body. The pain had gotten progressively worse over time. She had >90 minutes of arm stiffness every morning and was having trouble with simple tasks around the house. She also reported difficulty sleeping due to both pain and diarrhea.

JP had recently retired from actively managing and owning 6 corporations and spent 3 days a week watching her two young grandchildren (6 and 8 years old). A smoker for several decades, JP still smoked a pack per day.

Her family history included Crohn’s disease (mother) and gout (father). Her relevant medical history included being thrown from a car in an accident at age 13 and having a benign tumor removed from her abdomen at age 30. She also reported hepatitis of unknown type.

In addition, JP had diabetes than was poorly controlled, as evidenced by her most recent HbA1c of 7.3%. To help manage her pain, she was currently taking naproxen. A previous trial of tramadol was unsuccessful as JP said she “did not like the way it made me feel.”

In addition to naproxen, JP’s medication list included metformin, liraglutide, ezetimibe, losartan, conjugated estrogen, and carvedilol.
JP’s presenting labs showed normal rheumatoid factor and positive anti-nuclear antibodies (ANA; 1:320 in a homogenous pattern). She also had positive extractable nuclear antigen (ENA) antibodies, although they were negative for SCL-70, anti-Sjögren’s syndrome A, and anti-Sjögren’s syndrome B. Her ribonucleoprotein (RNP) antibody levels were positive at 7.2 (normal: <0.9). Despite her positive ANA and RNP levels, JP denied the presence of fevers, night sweats, oral or nasal sores, hair loss, muscle weakness, and sun sensitivity/rash.

Upon physical exam, JP had 22/28 tender joints and some global synovitis in her proximal interphalangeal and metacarpophalangeal joints.
So in summary, we had a female older than age 60 with a family history of autoimmune disease and several positive disease markers who still smoked regularly.

What happened next? We started by ordering a full panel of labs that included a hepatitis panel, anti-citric citrullinated protein, and serum protein electrophoresis (to rule out monoclonal gammopathy and possible multiple myeloma). I also repeated testing of ANA and ENA antibodies. X-rays of JP’s hands, feet, and chest were also ordered. Finally, I ordered a multibiomarker disease activity (Vectra) score due to a high suspicion of RA due to JP’s persistent joint pain.

I went over with JP the results of her lab tests on her second visit to the office. Low B12 levels likely were the source of some of her neuropathy symptoms. ANA and RNP results remained positive, while other tests (ie, hepatitis panel, anti-CCP) came back negative. Her Vectra score was 48, demonstrating moderate disease activity. Foot and hand X-rays showed osteoarthritic changes, while the chest X-ray illustrated possible interstitial lung disease (ILD). Bone mineral density testing was normal.

This was a complicated combination of results to interpret. Based on her symmetrical pain, consistent morning stiffness, and other factors, my initial conclusion was that JP had seronegative RA.

I began by assuring JP that I thought I could help with her pain. We agreed to start with methotrexate 2.5 mg, at a conservative dose of 5 mg/week to see if she would tolerate the medication. Repeat labs were ordered in 4 weeks. Despite the chest X-ray findings, I did not feel that JP had ILD but rather displayed abnormalities due to her smoking habit—if I had concluded otherwise, we would not have started with methotrexate as the drug should be avoided in patients with ILD.

I encouraged JP to call immediately if she noted any side effects from methotrexate. To prevent the development of osteoporosis, we also put JP on citrated calcium and vitamin D supplementation. I also discussed with her the links between smoking and RA, encouraging her to at least cut back on her pack-a-day smoking habit.

JP agreed to our plan and expressed optimism that she would begin to again have fun with her grandchildren instead of struggling to get through the day with them.

Three months later—as we had agreed upon when starting her on methotrexate—JP was back in my office for an initial follow-up. Because methotrexate is only effective as monotherapy in about 40% of our RA patients,1 and especially due to her complicated mix of comorbidities, I fully expected to hear that JP wasn’t feeling much better and that we would need to consider adding a biologic to her regimen.

Surprise, surprise! JP told me that her pain was “75% better.” Her attitude had clearly improved significantly as well. In fact, JP told me that she had been contemplating suicide prior to our first visit due to the persistent pain that was slowing her down and curtailing any enjoyment out of life. She said she had felt like a burden to her family and “didn’t want to live like this anymore.”

And now, just 3 months after the initiation of what we frequently consider a starter medication for the treatment of RA, JP was reporting that she “had her life back” and was no longer considering suicide. She was now able to look forward to the future instead of dreading it. Treating RA is certainly not “cookie cutter” medicine with consistent results from patient to patient. There are, like JP, some patients for whom methotrexate monotherapy can be effective in relieving pain for a long period of time.

We have a sign posted above a bell in the lobby of our office that reads, “If you feel better on your way out than when you came in, please let us know by ringing the bell.” After this initial follow-up visit, JP rang the “satisfaction bell” for the first time. JP remains on 5 tablets per week of methotrexate for the time being. We’ll continue to monitor her for any changes and adjust medications as needed. Knowing about her previous bout with depression and contemplation of suicide just gives me more motivation to keep JP thinking positive and feeling well.

Some days, it is hard to feel like we are making an impact on our patients. We see so many individuals with painful and debilitating chronic illnesses, and sometimes all we can offer is a listening ear and empathetic support. We all need motivation to keep going on these difficult days. Hearing the bell ring in our lobby gives me that little boost of energy I sometimes need, knowing that we changed the life of one more person for the better.

AUTHOR PROFILE:
Iris Zink, MSN, NP, RN-BC is a nurse practitioner at Lansing Rheumatology in Lansing, Michigan, and Immediate Past President of the Rheumatology Nurses Society.

 

 

Reference
1. Singh JA, Hossain A, Mudano AS, et al. Biologics or tofacitinib for people with rheumatoid arthritis naive to methotrexate: a systematic review and network meta-analysis. Cochrane Database Syst Rev. 2017;5:Cd012657.