We’ve been dealing with hallucinations now off and on for almost 4 years. Hubby is still pretty young, just turned 60, and his MDS is thinking he needs to try Nuplazid. He says it works, and the black box death warnings apply to the elderly and frail. ( He’s had Parkinson’s for 16 years and now some kind of dementia or extra pyramidal syndrome has set in but we don’t know exactly what yet. )
I am of course nervous about antipsychotics, and most of the discussions on this site have been negative. So far, we’ve kind of gotten by with medication reduction and supplements. But nothing is easy, and it’s extremely difficult to keep him “in the zone” where he is safe, can move pretty well and still work on his book.
I’d love to hear positive and negative experiences with antipsychotics to help weigh our decision here.
Thanks!
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LeharLover62
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"Over the follow-up period, 85.4% of patients experienced at least one adverse event (side effect) related to treatment, with most being mild to moderate in intensity. Serious treatment-related adverse events were reported in 41% of patients, and included pneumonia, urinary tract infection, and hip fracture. In total, 29% of patients discontinued treatment due to an adverse event related to Nuplazid."
"To date of the report, 61 patients have died, amounting to a mortality rate of 6.45 deaths per 100 patient-years. This was similar to the mortality rate seen in Parkinson’s patients of the same age across a Medicare database (7.3 per 100 patient-years), but lower than the mortality usually seen in people with Parkinson’s disease psychosis (28.2 per 100 patient-years), the team noted."
"This was the largest Parkinson’s disease psychosis study in which patients were followed for long periods, but the team noted that its open-label nature, the lack of a control group, and that the inability to follow patients after treatment discontinuation are clear limitations."
"Still, they concluded that “long-term study showed pimavanserin treatment to be generally safe and well tolerated. No new or unexpected safety findings were observed.”
Referring back to the 1st para above, I would draw different conclusions.
(The actual study has been removed from the link. Too bad.)
If I were 60 y.o. (a mere spring chicken) would I take a drug with a 6.5% chance it would kill me and a 40% likelihood of a serious adverse event. Probably not.
"Nuplazid increases risk for death in older adults with Parkinson’s disease"
Mayo Clinic, highlighted the implications of these findings.
“The study confirms previous concerns regarding safety of pimavanserin and more importantly brings to attention the importance of carefully considering risks and benefits of pharmacotherapy in PD psychosis, clear communication with patients and families and close observation to ensure safety,”
Yes, thank you it certainly sounds scary. We were even thinking of trying a few doses to see what happens, but the studies make it sound as though even one dose carries a risk of death.
Acadia Pharmaceuticals Announces Outcome of FDA Advisory Committee for NUPLAZID® (pimavanserin) for the Treatment of Alzheimer’s Disease Psychosis
SAN DIEGO, June 18, 2022--(BUSINESS WIRE)--Acadia Pharmaceuticals Inc. (Nasdaq: ACAD) today announced the outcome of the U.S. Food and Drug Administration (FDA) Psychopharmacologic Drugs Advisory Committee (PDAC) meeting for pimavanserin for the treatment of hallucinations and delusions associated with Alzheimer’s disease psychosis (ADP).
The PDAC voted 9 to 3 that the evidence presented does not support a conclusion that pimavanserin is effective for the treatment of hallucinations and delusions in the ADP population.
"We are disappointed with the outcome of today’s vote. We will continue to work closely with the FDA as it completes its review of the totality of our efficacy and safety data to enable a full assessment of pimavanserin’s benefit-risk in patients with ADP," said Steve Davis, Chief Executive Officer. "We continue to believe there is substantial evidence across multiple independent clinical studies and endpoints that support the efficacy of pimavanserin in ADP. There are no FDA approved treatments for this critical public health need and off-label use of multi-receptor acting antipsychotics have demonstrated poor patient outcomes, including worsening of cognition and motor function."
The FDA asked the PDAC today for advice and recommendations regarding the evidence that pimavanserin is effective for the treatment of hallucinations and delusions associated with ADP. The FDA is not bound by the PDAC’s recommendations, but takes its advice into consideration when making decisions on drug applications. The FDA’s target action date is August 4, 2022.
NUPLAZID was approved in the U.S. in 2016 as the first and only treatment for hallucinations and delusions associated with Parkinson’s disease psychosis (PDP). The totality of clinical trial, post-marketing and observational real-world evidence continue to support a positive benefit-risk profile for NUPLAZID for the treatment of hallucinations and delusions associated with PDP.
You said your husband takes supplements. Has he been taking melatonin? I guess melatonin can help with hallucinations if it is taken in 5 mg and more per day. Something that would do no damage
I empathize with what you are saying, but Nuplazid is different. By a 9 to 3 vote the scientists and doctors agreed the stuff is, in addition to a poor safety profile, ineffective.
My husband recently passed but he had horrible hallucinations. Seriously did virtually nothing. NuPlazid made a huge difference and almost made them go away entirely. Almost. But the cost was prohibitive so we had to return to Seroquel. He passed at 78 so he was older than your husband. No side effects experienced.
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