MBAnderson (categorized as Suspected/Mild Improvement): Seems to report rather slight/narrow improvements (constipation, feeling “lighter”), but with a clearly positive overall impression. Reports that his physical therapist recorded improved performance on timed exercises, but that he wouldn’t have guessed that. Still, this user classifies themself as someone that improved on treatment in other comments on Health Unlocked.
Ctime (Suspected/Mild Improvement): Says that he “did not experience dramatic symptom improvement”. We included him in the Suspected/Mild Improvement group because of his comment that at the end of his trial, his Carbidopa/Levodopa dose was reduced by his neurologist (indicating improvement), that his smell improved, and that he had gotten worse since stopping treatment.
Zogi (Suspected/Mild Improvement): Reports clear improvements in fatigue, anxiety, energy, cognition, and attitude, but said that “tremors and gait are a bit worse”. We count this patient as Suspected/Mild Improvement because they state that they believe the drug works, but it is unclear how they would score on the UPDRS Part II or III because of their gait/tremor status.
Changsha (Suspected Stabilization/No Effect): Seems quite certain that his disease remained stable during the trial, and that it has substantially worsened since going off of buntanetap. To the extent that the UPDRS Part II is somewhat subjective/personal, we could see this patient reporting an improvement at their Month 6 appointment.
Tocato (Suspected Stabilization/No Effect): Says that they got worse for the first four months of the study, but then got better in the last two months. They refer to themself as someone that improved during the trial three months after going off of treatment, which may or may not have come through in the measurements taken at the end of treatment.
It is worth noting that a couple of the No Effect patients, namely 1953bullard and BPW1, give reason to believe that they may report stable or slightly positive results on various endpoints, not because of buntanetap, but because of dramatic exercise and lifestyle changes that were made. Nonetheless, these patients may record an improved score on the UPDRS.
Also, it is worth noting XNay, who is listed as N/A because they do not comment on their experience in the Phase 3, but do say that they experienced significant improvement in the Phase 2a trial. They do not appear to be an active user of Health Unlocked, with only two comments. This comment is encouraging overall, but also makes us wonder if they would have continued to comment if they saw significant improvement in the Phase 3, and also adds support to our thesis that the higher doses in the Phase 2a were more effective.