As of May 2024, we found no new information to warrant any TOE grade changes.
As of 7/25/22, we found no new data to warrant any grade changes or changes to our conclusion.
We found a new study showing benefits in a preclinical model of stroke (PLoS One 2013;8:e79002). It is not clear that this model is relevant to ALS, so we did not change our Pre-Clinical grade. We found no new case reports or trials. Given 2 reports of serious side effects in PatientsLikeMe participants with MS, we changed our Risks grade from B to D. Our conclusion remains the same. At this time ALSUntangled does not recommend that patients with ALS take apoaequorin. Reasonable next steps would include a controlled study of apoaequorin in an ALS animal model and/or a small series of well-characterized patients with ALS using validated outcome measures and including serum and CSF pharmacokinetics.
Key Information
There is a rationale by which the calcium binding protein apoaequorin could work to slow ALS progression. Unfortunately, at this time there is insufficient information available to determine whether it does. The one small case series referred to above utilized a cocktail of therapies and is further weakened by the loss of its standardized outcome measurements. Information from the manufacturer suggests that apoaequorin is reasonably safe and well tolerated but there is no independent, systematic confirmation of this; two PatientsLikeMe members reported serious adverse events while taking it and it is fairly expensive.
At this time ALSUntangled does not recommend that patients with ALS take apoaequorin. Reasonable next steps would include a controlled study of apoaequorin in an ALS animal model and/or a small series of well-characterized patients with ALS using validated outcome measures and including serum and CSF pharmacokinetics.