Reviews

Summary

Positives

  • In a Norwegian pilot trial six of ten patients with severe ME/CFS experienced marked improvement, with mean SF-36 physical function more than doubling at 8-9 months and gradual gains in all symptom scores PMC.

  • A forum member discussing the trial described responders going from largely housebound to walking measurable additional steps per day, with the pattern of improvement starting 6-8 weeks after the first injection Phoenix Rising.

Negatives

  • Roughly half of trial participants did not improve at all, leaving them with the financial and infusion burden but no symptom benefit Health Rising.

  • A forum poster pursuing the drug off-label noted that depleting plasma cells also lowers protective IgG, making her wary of vaccine-preventable infections Phoenix Rising.

Hurdles & Side Effects

  • A patient seeking the drug for post-viral fatigue described months of searching before finding a hematologist willing to prescribe it off-label, since myeloma indications dominate insurance approvals Phoenix Rising.

  • A community member highlighted the per-dose cost (often tens of thousands of dollars) and the need for repeated subcutaneous administration at an oncology infusion center as the largest practical barrier Health Rising.

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