An Algerian Family with TNF Receptor Associated Periodic Syndrome (TRAPS) Associated Amyloidosis and the p.Thr79Met Mutation: Long-Term Follow-Up and Therapeutic Challenges in a Resource-Limited Setting

We report the long-term follow-up of an Algerian family from the south of the country with TNF Receptor Associated Periodic Syndrome (TRAPS) associated with AA amyloidosis, carrying the heterozygous p.Thr79Met mutation in the TNFRSF1A gene. The proband, a 36-year-old woman, and her affected father (I/2) both died from complications of end-stage renal disease related to AA amyloidosis. Two other affected siblings (II/8 and II/11) developed AA amyloidosis with preserved renal function (creatinine clearance 60 and 78 mL/min, respectively) while on long-term corticosteroid therapy. A young niece (III/1) remains free of amyloidosis to date. Although anakinra, an anti-IL-1 inhibitor, has been available in Algeria since 2020, all living patients have declined this treatment due to major logistical barriers: they reside in remote provinces, have limited financial resources, and are unable to travel monthly to Algiers to collect the syringes. They have thus opted to continue long-term corticosteroid therapy despite its potential limitations in preventing amyloid progression. This case series highlights the therapeutic challenges faced by TRAPS patients in resource-limited settings and emphasizes the need for decentralized access to biologic therapies to improve long-term outcomes.