Question about Nuplazid

Thank you. We ultimately did get a grant which covers the copay for about a year & is renewable. He's now been on the 34mg dose of Nuplazid for almost 6 weeks. I notice more improvement than with the 10mg dose, which because of mis-communication issues btw the neurologist & the manufacturer, he had to miss an entire week & then went on the higher dosage. He still has occasional delusions about our homeof41+ years not being his or that he "just got here" & wonders "who runs this place/system/organization". He still sometimes does not remember his way around the house, again because he "just moved to this new house". And occasionally does not recognize me as his wife (Capgras). But these are not as constant as before the Nuplazid. We see the neurologist at the end of August & he will evaluate then. More importantly, his memory, executive functioning, visual & auditory comprehension, ability to get his thoughts out, etc. have deteriorated significantly in the last few months. He has also lost an additional 10 lbs. since early 2018, nearly 75 lbs. from 229 lbs. to 156 lbs. Yet his appetite is good. Both his primary & neurologist say it's due to the "disease", i.e. Lewy Body Dementia.

Your husband sounds much the same as mine was. He would "see" 250 men pushing our travel trailer.I had to go to the county to get information proving that someone hadn't put liens on our house.
Sometimes he would be coherant. He went from 210 to 150 or so pounds.
The worst part was that he was angy with me often because I couldn't fix things for him . We argued a lot. When I heard him say, "We need to talk." I was full of dread.
He was a good man; I learned to live with it. ( but was so stressed.)By the time he started losing a lot of weight he didn't live a long time afterwards.
If he starts sun downing, wandering away from the house in the middle of the night, I solved it by giving him 10 mgs. of Melatonin at 4pm. and again at 9pm .The only time he wandered again was when my son forgot to give him his first dose until 6pm. He had Lewey Body disease. He had care from a psychiatrist that helped him some.

My husband has been on Nuplazid for 4 months. At first I thought it was helping, but recently the delusions have returned. Dr added Seroquel to be taken at night to help him sleep. He was waking around 2:30 AM with a lot of anxiety - the Seroquel has helped him sleep through the night. I am wondering if the Nuplazid could be making him worse since the side affects mention hallucinations and confusion. I am considering stopping the Nuplazid to see what would happen (Dr. has given me permission), but I am afraid he could get worse (though I am not sure how much worse he could get). Has anyone stopped this drug after taking it for a while?

@cmk1952, such hard decisions to make, whether to continue or stop Nuplazid. I believe @ruthannw faced a similar situation and ultimately treatment for Nuplazid was stopped.

CMK, has your husband tried taking a break from the medication? Did you notice any change?

My husband was able to get this drug at no charge by applying through AcadiaConnect. They were very easy to work with. The drug was sent every month from Centerwell Pharmacy.

This is the most up-to-date published information on Nuplazid anywhere in the world. I hope it helps.

Nuplazid: Uses and Conditions Treated

Nuplazid (pimavanserin) is an FDA-approved medication specifically designed to treat hallucinations and delusions associated with Parkinson's disease psychosis. While effective in managing psychotic symptoms without worsening motor function, Nuplazid requires careful consideration when used alongside other antipsychotics like Seroquel (quetiapine) due to potential interactions, particularly the risk of QT interval prolongation that could lead to cardiac complications.

Nuplazid Overview

Approved by the FDA in 2016, this atypical antipsychotic medication is the first and only treatment specifically indicated for hallucinations and delusions associated with Parkinson's disease psychosis (PDP). The active ingredient, pimavanserin, works primarily on serotonin receptors without significantly affecting dopamine pathways, allowing it to address psychotic symptoms without exacerbating motor issues common in Parkinson's patients. While effective for its intended use, Nuplazid carries a boxed warning regarding increased mortality risk in elderly patients with dementia-related psychosis unrelated to Parkinson's disease.

The primary mechanism of action involves inverse agonism and antagonism at serotonin 2A (5-HT2A) receptors, with a lesser effect on 5-HT2C receptors. Unlike traditional antipsychotics, pimavanserin does not significantly bind to dopamine, histamine, muscarinic, or adrenergic receptors. This selective action allows for the management of psychotic symptoms without interfering with dopaminergic pathways, which is crucial for maintaining motor function in Parkinson's disease patients.

Dosage and Safety

The recommended dose of Nuplazid is one 34 mg capsule taken orally once daily, with or without food. For patients unable to swallow the capsule whole, it can be opened and sprinkled on applesauce, yogurt, pudding, or a liquid nutritional supplement. Common side effects include peripheral edema, nausea, confusion, hallucinations, constipation, and gait disturbance. A boxed warning highlights an increased risk of death in elderly patients with dementia-related psychosis. Regular monitoring by healthcare providers is essential to assess efficacy, manage side effects, and evaluate potential QT interval prolongation.

Drug Interactions

Caution is advised when combining Nuplazid with other medications, particularly those that prolong the QT interval or affect CYP3A4 metabolism. Strong CYP3A4 inhibitors like ketoconazole necessitate a dose reduction to 10 mg daily, while concomitant use with strong or moderate CYP3A4 inducers should be avoided. The combination of Nuplazid and Seroquel requires careful monitoring due to the increased risk of QT prolongation and potential cardiac complications. Healthcare providers should consider alternative treatments or dosage adjustments to minimize interaction risks when prescribing multiple antipsychotics.

If anyone wants to know how I got this information, please message me. It is impossible for anyone to hoard knowledge anymore. It is not wisdom and does not replace a qualified physician, but it does level the playing field.

Now we know what questions to ask.

I hope everyone lives in peace and good health.