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Has Anyone Started Nuplazid?

A MyParkinsonsTeam Member asked a question 💭
Manassas, VA

Husband was on seroquel. That was stopped and he started on Nuplazid a couple weeks ago. Seems to be having a rough adjustment period.

June 29, 2016
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A MyParkinsonsTeam Member

My husband, Ron, has been on Nuplazid since July 2016. He was having horrible & terrorizing hallucinations, delusional and paranoid that people were trying to harm him. When he started the Nuplazid, he was at his ultimate worse. I was becoming afraid of him as I thought he might confuse me with one of his hallucinations. After a month of being better on Nuplazid, he started getting the hallucinations back which are mostly at night. I contacted his doctor and requested that I give him Nuplazid before bedtime and it seems to be working now. He does have some confusion, mild hallucinations and he had some constipation. We have changed his diet to include more fruits. He was drinking a lot of orange juice with Miralax to help with the constipation. He developed UTI infection. Found out that too much acid from the orange juice causes UTI infections. Ron has stopped orange juice, now drinking cranberry and apple juice. If on Nuplazid, the hallucinations return, go to ER or doctor's office immediately and have them check for UTI infection. Nuplazid does not work if there is a UTI infection. We are working with Nuplazid Connect to get assistance with the cost. I have contacted the manufacturer and have given them all the reactions that Ron was having. While discussing it with them, they recommended that I try giving Nuplazid at bedtime. Hope that helps anyone using or looking into using it. The Nuplazid was our only hope left and didn't want to stop it.

December 8, 2016
A MyParkinsonsTeam Member

Nuplazid, made by Arcadia, is a new drug released in April. The FDA expedited the clinical trial process because of some improvements found in decreased hallucinations and cognitive disturbances when the medication was given to Parkinsons patients. The original FDA approval was for people who were psychotic.

Any drug of this type will be strong, and in fact, may make things worse for your husband. Most MDs will have you take the medication for as many as 4-6 weeks. But until then it could be a bumpy ride. Watch out for changes in behavior, depression, worsening cognitive impairments, and report all to your husbands neurologist/MDS, sorry you may find yourselves being a guinea pig for awhile (i would say "RAT" to be more accurate, but it has its own negative connotation)

June 29, 2016
A MyParkinsonsTeam Member

I have been on Nuplazid for +/- 6 months and got rid of the hallucinations completely. I miss seeing the animals sitting at the foot of my bed.

December 7, 2016
A MyParkinsonsTeam Member

oh i take only seroquel, nortryptiline, and klonipin at night. also 10 mg of melatonin.

December 14, 2016
A MyParkinsonsTeam Member

@KimGibnerCrouse, you are correct, I just worded it wrong. MY husband has Lewy Body and so far (4 months) he has been almost hallucination free! Between the Exelon patch, Clonazepam, Carbodopa/levodopa and Nuplazid we have hit a dosage that has him better than he has been for several years.

November 6, 2016

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