To describe three sarcoidosis-associated small fiber neuropathy (S-SFN) patients treated with tocilizumab.

S-SFN is common in systemic sarcoidosis, causing chronic pain and poor quality of life. It is often resistant to conventional therapies. Since IL-6 is elevated in patients with sarcoidosis, we hypothesized that Tocilizumab, an anti-IL-6 receptor monoclonal antibody, may be an effective treatment for S-SFN.

Case series

·       Patient 1: 54 years-old male with systemic sarcoidosis involving the heart, lymph nodes, skin, and bones, with biopsy-proven S-SFN causing severe refractory neuropathic pain and dysautonomia. After failing methotrexate, Infliximab (anti-infliximab antibodies), and intolerance to IVIG (aseptic meningitis), he was transitioned to intravenous Tocilizumab 800 mg every 28 days. Pain scores, on average, were reduced from 9/10 to 4/10, with improved autonomic symptoms.

·       Patient 2: 67-year-old female with systemic sarcoidosis involving the lungs, lymph nodes, and joints, with biopsy-proven S-SFN, presented with paresthesia and numbness in her extremities, as well as dysautonomia . She discontinued adalimumab due to anti-adalimumab antibody development, and IVIG was stopped after superior mesenteric artery thrombosis. She was transitioned to subcutaneous Tocilizumab 162 mg every 14 days, leading to reduced numbness, improved autonomic function, and better quality of life.

·       Patient 3: 61 years-old female with systemic sarcoidosis involving the lungs, lymph nodes, joints, spleen, and bone, with biopsy-proven S-SFN causing neuropathic pain and dysautonomia. She failed multiple therapies (corticosteroids, TNF-alpha inhibitors, and methotrexate). After starting Tocilizumab 162 mg every 7 days, she experienced improvement of systemic symptoms, especially joint pain, in parallel with improvement of neuropathic pain and dysautonomia.

These three cases suggest that tocilizumab may improve S-SFN symptoms in patients refractory to other immunosuppressive therapies. These observations warrant further study of tocilizumab for otherwise refractory S-SFN.