What's The Consensus Here On Nuplazid? My Mother Has Psychotic Episodes Apparently Related To Her Parkinsonism. Would It Help Or Hurt? | MyParkinsonsTeam

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What's The Consensus Here On Nuplazid? My Mother Has Psychotic Episodes Apparently Related To Her Parkinsonism. Would It Help Or Hurt?
A MyParkinsonsTeam Member asked a question 💭

My mother was diagnosed with Parkinsonism in 2013. Since around April, she's suffered from increased cognitive problems (e.g., delusional episodes and vague hallucinations). Her neurological treatment team has prescribed Nuplazid but she's reluctant to take it because of its higher mortality risk and lack of a track record. Unfortunately, she has these psychotic episodes every few days and I do a poor job handling them. What should I do?

posted December 2, 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.
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posted December 8, 2016
A MyParkinsonsTeam Member

My husband has ben o Neuplazid since november, 2016 and he is a changed man. No more delusions. No more hallucinations. It is a miracle. It took a while for it to work but is has been a wonder. He is off all other parkinson's meds and is thinking clearly. His voice is still low and he no longer walks but he is so much better.

posted July 11, 2017
A MyParkinsonsTeam Member

My husband was diagnosed in 2007. His hallucinations started this past May. At first I thought it was because it had turned hot here and the stress from working in the heat. I tried to get him to stay inside more but he's happier working outside. The hallucinations occurred all summer even on the cooler days or when he did stay in the AC. We started on the Nuplazid 6 weeks ago tomorrow. We saw no difference for 4 weeks, then finally at 4 1/2 weeks the hallucinations have decreased. He still has some but not everyday.

posted October 23, 2017
A MyParkinsonsTeam Member

I don't really understand why my Doctor and a Neurologist ( first neurologist I had seen in several years , resources have gotten slim ....) prescribed Nuplazid , I am supposed to take it for a while , a month or so , I think ) then gradually cut the intake of some other drug , in this case I think Carbidopa / Levodopa and if I remember correctly , Ariprazole............I have been taking both of them for a long time.....the outcome of getting off of the two drugs while getting on to the Nuplazid is supposed to create an improvement in my general well-being , I forget exactly HOW........nuplazid in my case seems improbable as I don't have any problems with hallucinations or the like.............in the few weeks I have been taking Nuplazid I have had an increase in physical tremor in my left hand , fingers, arm.............and a noticeable increase in what I hate to say it DROOLING , this is unpredictable and happens when speaking or when not speaking , just drooling,I find it disgusting and prosaic at the same time............I have physical therapy tomorrow and will be able to discuss these with a qualified medical person........

posted May 1, 2017
A MyParkinsonsTeam Member

Buttie, PD is a horrible disease and noone knows "how to handle" all the situations that come up that were NEVER an issue before. Finding the right words, thought processes is a learning process. Anything you do to help alleviate her concerns is better than nothing. Having someone there who cares and is willing to be a part of the treatment is BIG. We all "aren't that good" at what we are doing for our partners...there is a whole new language that has to be developed and understood. Hang in there Buttie, and Big hugs to you for being there for your mom

posted December 3, 2016

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