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Topic Nuplazid - new PD anti-hallucination drug Go to previous topic Go to next topic Go to higher level

By DBKinNC On 2016.10.20 19:30
My husband was diagnosed with PD 11+ years ago. Through his Neurologist at Duke University, he was fortunate enough to be in the Clinical Trial for Nuplazid which began 5 years ago. He was monitored closely for all of those 5 years. Then in April of this year, when the FDA approved it as a prescription drug, our free supply of this awesome drug ended.

The struggle to be able to obtain the drug now that it is a Rx has been horrendous. The Co-pay alone through his drug policy is almost $900 a month. We have applied for, and finally been approved for, the Nuplazid Assistance Fund which will work with Aetna, CVS Speciality Pharmacy, and the Assistance Fund to pay the majority of those incredible monthly costs.

Nuplazid is a wonder drug. There are no negative side effects that we ever detected. My husband was having horrific hallucinations 5 years ago when he began the Clinical Trial, and he was afraid to go outside at night, afraid to drive in the car because of all of the things he saw rise up in the road, saw people and things all around him all the time - it was so frightening for him.

The Nuplazid Clinical Trial was a double blind study, so his Neurologist didn't know, and for sure we didn't know, if he was getting the drug or a placebo at the beginning. Within 2 weeks of starting the drug the hallucinations stopped totally!!! It was amazing. We were all thrilled that he was one of the fortunate ones to be getting the drug. Now, 5+ years later, he occasionally has a hallucination where he sees a cat or a person or even a group of people, but nothing scary or horrific like he did 5 years ago before Nuplazid. These break-thru hallucinations only began about a year ago. His Neurologist is considering raising the standard dose (2/17mg tablets per day) to see if that will eliminate the few hallucinations he has now.

So if you have the opportunity to utilize this awesome drug - go for it!!

By jcoff012 On 2016.10.21 20:37
Glad that this worked for you. I remember your posts from a few years ago...wasn't he interested in trying stem cell treatments?

Glad to learn your copay for this new drug may be far less than before...$900 a month is staggering! I cannot imagine!

I need to go online to look up this drug...my husband has not had hallucinations and his neuro is very involved in PD research, but has not mentioned it on his website...So glad this worked for your husband.

By jcoff012 On 2016.10.21 20:44
HOLY COW! All I can say was thank the Lord Carl doesn't need this...there is not generic and it is over $2000 for a 60 day supply at CVS! Have no idea what or if our insurance would pay, but Heavens!

By flowers12 On 2016.10.23 15:40
I looked this up on the web and I'm confused - "Nuplazid is used to treat hallucinations and delusions caused by psychosis that is related to Parkinson's disease.

But is not approved for use in psychotic conditions related to dementia. Pimavanserin may increase the risk of death in older adults with dementia-related conditions."

We asked our neurologist In August if he would prescribe Nuplazid and at the time he said no because he hadn't done enough research yet and it had serious possible side affects. I don't quite understand the difference between Parkinsons dementia and dementia. Maybe I'm too tired to think it thru. Can you help me?

By VioletV On 2016.10.23 16:06
Flowers,
perhaps it is this:
dementia is a broad term for loss of cognitive function -- for example my husband's total loss of memory. There are other dementias, such as Alzheimer's, and apparently Nuplazid only is effective when the dementia and psychotic symptoms are linked to a PD diagnosis.

Maybe.

VV

By flowers12 On 2016.10.23 16:12
Thanks Violet for the response. It is confusing to me. I've emailed our prescription plan for the cost just to see what it would be. We don't see the neurologist again until first of December and I'll see if I can understand the difference. Right now my hubby isn't too bad with hallucinations and delusions but i see them coming back again. He's been on Aricept for over a year.

By DBKinNC On 2016.10.24 23:12
It was explained to us during the 5 year Clinical Trial that this is a drug aimed specifically aimed at treating PD hallucinations and delusions brought on by the long-term use of Carbidopa/Levadopa and Myrapex, and some of the other PD specific drugs. That is what we were told. It was not conceived as a drug for general psychosis. The hallucinations and delusions my husband experiences he knows are not real. He talks about them. And even when he was having the very scary ones before Nuplazid, he knew they were not real. His Neurologist explained that these hallucinations and delusions that my husband sees do not classify him as psychotic. He is not having a total break with reality as in other psychosis. I hope this helps some...sorry if it is confusing.

By carman96 On 2016.10.30 07:21
DB, glad your husband has had success at the trials. Hope you can get it reasonably.
My husband has been on Nuplazid for three months, and it's not helping! He still has the same delusions every day.
Luckily he had reached his deductible and the insurance is paying it.
Glad it is helping some people. Just very disappointed that it hasn't helped my husband.

By flowers12 On 2016.10.30 12:42
I found out that Nuplazid would cost $745.96 for 3 months thru our mail order pharmacy. I'm shocked at the cost. I guess I won't be asking the neurologist to let us try it. My hubby isn't having that bad of delusions/hallucinations on the Aricept yet but if it gets bad again like before the Aricept then we will try another drug and hope it helps. Carmen, I hope the Nuplazid kicks in for your hubby. Did the neurologist say it could take a few months to kick in?

By DBKinNC On 2016.10.30 15:01
Carman96: For my husband it started working after about 2 weeks. But now after 5+ years he has a few breakthru hallucinations, but nothing scary.

By DBKinNC On 2016.10.30 15:08
Flowers12:
Call Nuplazid Connect and ask about their Assistance Fund. You complete forms and so does your doctor. It's worth it. Most people cannot afford the copays until/if it becomes a formulary drug.
Here are the phone numbers I call:
Nuplazid Connect
+1 (844) 737-2223

The Assistance Fund
855-845-3663

By flowers12 On 2016.10.30 15:42
Donna, thank you so much for this information. I will check into it. My hubby has delusions about work a lot more these days, usually around 2am and he rambles on for a few hours about getting this done and that. He did overhead fire sprinkler work and is often looking for the attic so he can repair a pipe. I can usually lead him back to reality fairly easily. Sometimes just asking him if he knows his address brings him in to focus, sometimes I toss the ball with him and that gets him focused. So far I'm lucky that the Aricept has worked so well. Before the Aricept we had many really bad dementia episodes that left me feeling helpless.

By LOHENGR1N On 2016.10.30 16:54
Wow, reading this thread just about makes me want to puke! Really it kind of makes Me sick. This drug that costs so much is to treat the effects of the other drugs we take? Yet we still are expected to keep taking those drugs? So the pharmaceutical companies make money selling us these medications then after We've taken them for long duration and the medication is almost doing more harm than good they really sock us in the wallet for more medication to cover up the damage (counter side effects). Common sense would be trying to see if lessening the drugs could be done to address the problems, but then that won't make big pharma those big bucks. I better stop here before I really get going.

By flowers12 On 2016.10.30 17:06
Do you take carba dopa levo? It sounds like you have a good handle on your meds.

By LOHENGR1N On 2016.10.30 20:01
Yes I take Carbo/L-dopa, have been for probably over 25 years. I've been the kind of patient that if the Doc said take 3 a day I'd start off with 3 halfs a day and work from there. I have a friend was my coworker who is the exact opposite and took what he was told over the years I've had less problems than He from dyskinesias to hallucinations He's wheel chair bond now. But this seems to prove one of many trade offs and maybe some of the things that they are finding as "new" symptoms are really side-effects from medications. I don't know, I know We Parkies are broken, out of step with normal and the more we chase trying to be normal the deeper we seem to delve into Pandora's box of pharmaceuticals and the more problems we have. But that's just me and my thoughts. Others have their opinions. Then again I live alone so any quirks I have aren't driving anyone else bananas.

By flowers12 On 2016.10.30 20:41
I've often seen how my hubby is more alert without his meds. I've cut them back at times to see how it affects him and he is more alert but eventually the shaking and shuffling gets the best of him and we go back to the 2 1/2 tabs 3 times a day. He can have delusions with any dose. The slowness is gettiing worse and his being able to answer me. I think the not answering is what is driving me nuts this week. Right now, he had his meds at 4pm, he is able to talk and is alert making jokes with our son watching a TV show. It's so unpredictable.

By DBKinNC On 2016.11.06 19:06
LOHENGRIN: I could not agree with you more!!! Nauseating is too weak a word for what I have learned about all of the awful drugs forced on the vulnerable PWP. The out of control feelings that comes with tremor, unstable gait, fatigue and so many other symptoms each PWP experiences position them to be totally at the mercy of their doctors and then the pharmaceutical companies. They want their "normal" lives back and are deceived into believing each drug added to the arsenal promises more renewed "normalcy". Instead they become more and more addicted, never to be able to withdraw from these powerful drugs and their mounting side effects.
I sooooo wish we had known it was even possible for Joe to take half of what the doctor ordered as you successfully have. It's been 11 years of Sinemet ( now 6 times a day 1 1/2 25/100's and Mirapex.
So thankful you were prudent and didn't blindly follow your doctors orders. So thankful you stay with us, and contribute so much love and caring to all of us, LOHENGRIN. 💜💜


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