Question about Nuplazid

Posted by lena0825 @lena0825, May 11 5:07pm

I have a question. Is the LO of anyone out there on Nuplazid? My LO has just started with some free samples, but I'm wondering how y'all are managing the cost (very high) & whether there has been noticeable improvement (or not) in you LO. What about side effects? My LO has been on Nuplazid for only 5 days, so it is too early to tell. Any advice is most welcome. Thanks in advance.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@lena0825 Your LO is now taking Nuplazid but you would like more information on it. One thing you can do is ask your pharmacist. They should be a wealth of information. I personally don’t have information, but I’m sure other members do. As for cost, i added this link to GoodRX, which talks about insurance and costs
https://www.goodrx.com/nuplazid/medicare-coverage
Can you get info from your pharmacist and drug pricing while we wait for other members to join the discussion? I was only able to find 1 other member whose spouse was on Nuplazid. @joybiss. I’m not sure, though, if she is still active. If so, I hope she will join the discussion
P.S. does LO refer to loved one? Curious minds!

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@becsbuddy

@lena0825 Your LO is now taking Nuplazid but you would like more information on it. One thing you can do is ask your pharmacist. They should be a wealth of information. I personally don’t have information, but I’m sure other members do. As for cost, i added this link to GoodRX, which talks about insurance and costs
https://www.goodrx.com/nuplazid/medicare-coverage
Can you get info from your pharmacist and drug pricing while we wait for other members to join the discussion? I was only able to find 1 other member whose spouse was on Nuplazid. @joybiss. I’m not sure, though, if she is still active. If so, I hope she will join the discussion
P.S. does LO refer to loved one? Curious minds!

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Thanks. I've already spoken with the manufacturer & our insurance provider. I was looking for the experience of some users.

And, yes refers to Loved One.

Again, thanks for the response.

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@lena0825

Thanks. I've already spoken with the manufacturer & our insurance provider. I was looking for the experience of some users.

And, yes refers to Loved One.

Again, thanks for the response.

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@lena0825, as few members like @joybiss @pspt @betsyp and @healthsurrogate have spoken about Nuplazid (pimavanserin) in the Parkinson's support group. Hopefully they can join this discussion to share their experiences with their loved ones.

It's been a couple of weeks now that you're loved one has been taking the drug. How is it going?

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Hello lena0825. My husband had Lewy Body Dementia and took Nuplazid for 3 yrs. He stopped because it wasn't really helping that much and the expense was so great. We were fortunate to have a grant from the Pan Foundation to cover the cost that MC did not cover. Otherwise we could not have afforded it. If you go to panfoundation.org website, they will ask questions about disease but it depends on whether or not $$'s are available. It is easy to apply and a phone # with people who are very helpful. Good luck. Maybe it will work for your LO. Ruth Ann

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@ruthannw

Hello lena0825. My husband had Lewy Body Dementia and took Nuplazid for 3 yrs. He stopped because it wasn't really helping that much and the expense was so great. We were fortunate to have a grant from the Pan Foundation to cover the cost that MC did not cover. Otherwise we could not have afforded it. If you go to panfoundation.org website, they will ask questions about disease but it depends on whether or not $$'s are available. It is easy to apply and a phone # with people who are very helpful. Good luck. Maybe it will work for your LO. Ruth Ann

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Ruth Ann,

Thanks for your reply. Yes ,the cost is great. We just started with Nuplazid – about 3 weeks ago. He doesn't see any difference, but I see some improvement in his engagement in conversation & less frequent / intense REM Sleep Disorder. But his delusions / hallucinations are still there. He's now hearing voices in the house as well. We're going to give it a try until his next neurologist appointment in August. We'll be enrolling with HeatlhWell.org for a grant. That's where Acadia, the manufacturer first sent us. But they said there were others as well as help from Acadia itself. Given our income, I'll be very surprised if we get any funding. I find the cost highway robbery. I don't see why my LO can't increase his quetiapine (Seroquel) as he's only taking 25mg or another atypical antipsychotic. He's a bit dizzy as well, but he was dizzy most of last summer due to heat & sunshine. But then again, he insists on dressing in jeans & a sweatshirt / long sleeved warm shirt – he's always cold. I think he's overdressing. Plus it's nearly impossible to get him to drink enough water to stay hydrated. Again, thanks, your reply was helpful. Pauline (Lena)

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@colleenyoung

@lena0825, as few members like @joybiss @pspt @betsyp and @healthsurrogate have spoken about Nuplazid (pimavanserin) in the Parkinson's support group. Hopefully they can join this discussion to share their experiences with their loved ones.

It's been a couple of weeks now that you're loved one has been taking the drug. How is it going?

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Hi. See my response below to Ruth Ann about how it's going. Thanks for asking.

Pauline (Lena)

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@lena0825

Ruth Ann,

Thanks for your reply. Yes ,the cost is great. We just started with Nuplazid – about 3 weeks ago. He doesn't see any difference, but I see some improvement in his engagement in conversation & less frequent / intense REM Sleep Disorder. But his delusions / hallucinations are still there. He's now hearing voices in the house as well. We're going to give it a try until his next neurologist appointment in August. We'll be enrolling with HeatlhWell.org for a grant. That's where Acadia, the manufacturer first sent us. But they said there were others as well as help from Acadia itself. Given our income, I'll be very surprised if we get any funding. I find the cost highway robbery. I don't see why my LO can't increase his quetiapine (Seroquel) as he's only taking 25mg or another atypical antipsychotic. He's a bit dizzy as well, but he was dizzy most of last summer due to heat & sunshine. But then again, he insists on dressing in jeans & a sweatshirt / long sleeved warm shirt – he's always cold. I think he's overdressing. Plus it's nearly impossible to get him to drink enough water to stay hydrated. Again, thanks, your reply was helpful. Pauline (Lena)

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Hi. Just another bit of info. After my husband stopped Nuplazid, dr. put him on Clozapine, 25 mg to start and up to 75 mg at end. Very old drug, not expensive and more effective than Nuplazid ever was. He also had REM sleep disorder and hallucinations. They were the worst for both of us. He saw big, mean, ugly people and that continued until his death. So hard to live with. One blessing with losing him. He didn't have to deal with those people any more. Thinking of you.

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@ruthannw

Hi. Just another bit of info. After my husband stopped Nuplazid, dr. put him on Clozapine, 25 mg to start and up to 75 mg at end. Very old drug, not expensive and more effective than Nuplazid ever was. He also had REM sleep disorder and hallucinations. They were the worst for both of us. He saw big, mean, ugly people and that continued until his death. So hard to live with. One blessing with losing him. He didn't have to deal with those people any more. Thinking of you.

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Forgot to add that he was also on Quetiapine (Seroquel) 75 mg along with the Clozapine.

REPLY
@becsbuddy

@lena0825 Your LO is now taking Nuplazid but you would like more information on it. One thing you can do is ask your pharmacist. They should be a wealth of information. I personally don’t have information, but I’m sure other members do. As for cost, i added this link to GoodRX, which talks about insurance and costs
https://www.goodrx.com/nuplazid/medicare-coverage
Can you get info from your pharmacist and drug pricing while we wait for other members to join the discussion? I was only able to find 1 other member whose spouse was on Nuplazid. @joybiss. I’m not sure, though, if she is still active. If so, I hope she will join the discussion
P.S. does LO refer to loved one? Curious minds!

Jump to this post

Thank you. Nuplazid is not available through a regular pharmacy, only a specialty pharmacy. The neurologist needs to go through Acadia the manufacturer. Then prescribe though the specialty pharmacy & send it for insurance approval. Acadia provides free samples until the prescription comes through at the specialty pharmacy. We've had dosage issues in that the Dr. wanted him to ratchet up from 10mg / day to 34mg / day. There has been much confusion BTW the Dr., Acadia & CVS. We are now ending our 2 sets of 14 day sample of the 10mg. Only a one month supply can be sent at a time. Lots of faxes back & forth btw Dr. & Acadia. Still no prescription, but Acadia will provide another 28 supply — now it will be the 34mg. They told me that last week but DIDN'T tell me the Dr. needed to fill out yet another form, until 3 days ago! Our current supply runs out tomorrow! So spent much of the day on phone / via email btw the two. With me laid up in bed with a foot fracture since last Sat. It's a bit of a mess. So there we are. I will update when we see how he does on the Nuplazid — takes 6-8 weeks for it to be fully effective. Right now I would say he's retrograded, but that might be from the stress of my broken foot. Much activity around here, health aide, my sister's here for a few days, daughter to come sometime next week, son & his family in & out. Very stressful for my husband. Thanks for listening to my venting.

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My husband who died with Parkinsons used it and it was helpful. You can look for an organization that gives the drug for a small co pay or free. Johnson and Johnson is one of them. Your neurologist might have the name of one.
one of his drugs was $900 a month WITH his insurance and he got one with a co pay for $100 a month through the organization.
I can hunt for it for you if you can't find one.

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