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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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https://forums.phoenixrising.me/thr...fiber-neuropathy-question.62252/#post-2227451Eculizumab (Soliris) is the fourth most expensive drug on the market in the US, costing $400,000 to $700,000 per year, it has only four FDA approved indications, all of them quite rare, and it is associated with some severe adverse events/risks. So I doubt it has been tried on anybody with ME/CFS and small fiber neuropathy.
At a list price of approximately $500,000 per patient per year, eculizumab, which is also approved to treat atypical hemolytic uremic syndrome and generalized myasthenia gravis, is one of the most expensive therapies in the world. It sells for $6543 per vial; the wholesale acquisition cost of ravulizumab is slightly lower at $6404 per vial, the company said in a recent filing, according to Reuters. Reuters also noted that the newer drug has an FDA black box warning for the risk of life-threatening meningococcal infections and sepsis, the same as eculizumab.