Nuplazid - hallucinations & delusions, Lewy Body dementia

[Alex2004]

Hi everyone,

Does anyone have any experience of NUPLAZID® (pimavanserin) and results in its treatment of delusions and psychosis in Parkinson's related dementia? My Mum has Lewy Body dementia and we have been trying suggestions from this forum, including CBD oil, coconut oil, Vit B HCL and Niacin but none have worked for her and the hallucinations / delusions are now worse. Nuplazid is not yet licensed in the UK.

Many thanks.

[park_bear]

healthunlocked.com/parkinso...

[Alex2004 in reply to park_bear]

Thanks very much for sharing this.

[MBAnderson in reply to park_bear]

So, what you are saying in simple terms part bear is that death has been a side effect.

[Despe]

If Ambroxol (expectorant) is available in UK, try it. There were clinical trials that concluded (?) Ambroxol is helping Lewy Body Dementia.

[Alex2004 in reply to Despe]

Thanks a lot - I hadn't heard of this so will certainly be taking a close look at this research.

[Despe in reply to Alex2004]

Here one of the many web links on Ambroxol:

scienceofparkinsons.com/201...

[jeffreyn in reply to Despe]

Despe, I can't find "lewy" or "dementia" in that SoPD blog post. Do you have another reference that connects Ambroxol to LBD? Thanks.

[Despe in reply to jeffreyn]

DEAR Jellywoman,

we are extremely grateful to people like you who participated in the clinical trials. Personally, I am extremely grateful that because of you my 83 year old mother has been healed and in top shape now. She had a very severe advanced stage of Lewy body dementia (LBD) for almost 12+ years. Twenty-four months ago she started taking selfadmitted Ambroxol (185 days x 6mg / kg body weight) and today she is lasting healthy and much better than her classmates….

ONCE AGAIN I PERSONALLY THANK YOU! SO MUCH!! and MY MOMMY REALLY LOVE YOU!

GREETINGS from Bulgaria

scienceofparkinsons.com/202...

[jeffreyn in reply to Despe]

Thanks for correcting the SoPD blog link and quoting the relevant comment.

My reaction today is the same as it was in January (i.e. "Wow").

[Despe in reply to jeffreyn]

You are welcome. If it's available where you live, you should consider trying it. Good luck.

[Alex2004 in reply to Despe]

Thanks again. Is this available in the uk. Is anyone trying it at the moment ?

[Despe in reply to Alex2004]

My husband was on it. It isn't available in the US, but my sister who lives in Europe and it's over the counter cough syrup was mailing it to us. Unfortunately, due to COVID-19, there have been no flights from Europe for months and haven't have any left. It did help my husband with clearing his throat. Once there will be flights again, she will continue mailing it to us.

[Alex2004 in reply to Despe]

Hi what is the dosage of the cough syrup please? I see in the clinical trial participants had to take 21 pills (1.26g) per day.

[Despe in reply to Alex2004]

I don't remember exactly, but he didn't follow the clinical trials huge dose. He was taking 20ml X 3 a day. It still helped him.

[dangilio in reply to Alex2004]

hi alex did you try ambroxol ?

[Alex2004 in reply to dangilio]

Hi there, we tried a low dose of Ambroxol for a few months but there was no change on the hallucinations. To be honest, my Dad wasn’t convinced about Ambroxol so we probably didn’t give it a fair trial in my Mum and I would like to try it again. We weren’t expecting it to have an effect on the hallucinations but I though it may slow the disease progression.Since I last wrote, my Mum’s LBD has progressed, she is more confused but actually is calmer and more settled. This change has been coupled with some Parkinson’s symptoms, tremors and stiffness which we were debating how to tackle as some meds could worsen the psychiatric symptoms. She has just returned from a 3 week stay in hospital after a severe stomach bug, interestingly they put her on a strong vitamin B compound, Thiamine and a multivitamin / mineral supplement and the tremors have stopped. I had been debating whether to start Thiamine HCL again before she went to hospital but as it’s included in this compound and the combination seems to be working I will wait and see.

I would like her to try Ambroxol again to try and delay further progression but the pill regime is not manageable. I hope a high strength liquid dose is possible in the future.

[dangilio in reply to Despe]

hi despe, thank for your report. did your mom had had psycosis or delusions before ambroxol?

[Despe in reply to dangilio]

It is not my mom, it is my husband. No, he didn't have/doesn't have psychosis or delusions before or after Ambroxol.

[dangilio in reply to Despe]

thanx despe.. anxyety?

[Despe in reply to dangilio]

Everyone with PD has anxiety to a degree. It depends on the individual. In general, even people without PD have some kind of anxiety for various reasons.

[dangilio in reply to Despe]

and did ambroxol help for this?

[Despe in reply to dangilio]

I am not sure. Ambroxol is for cognition improvements. There are supplements that help with Anxiety like Ashwagandha, L-Theanine and some other good supplements. If you don't take Magnesium, I would highly recommend it, and if you have muscle pains, try Oil of Magnesium and spray it on wherever hurts.

[dangilio]

have you try queitapina (seroquel)

[dangilio]

hi alex have you tried seroquel (queitapina) low dose

[Alex2004 in reply to dangilio]

Hi there! The consultant agreed to start her on a low dose 15mg this week, so we are really hoping it might help. Will let you know,

[Parkie- in reply to Alex2004]

I remember a post on seroquel a few months ago but I can't find it, that talked about high death risk for pd patients. A quick Google search gave this:

sciencedaily.com/releases/2...

"Overall the Parkinson's patients who used antipsychotics had 2.35 times the MORTALITY of the non-users. The relative risk seemed to vary by the specific drug -- for example, 2.16 times higher for quetiapine fumarate (SEROQUEL) compared with non-treatment, 2.46 for risperidone, 2.79 for olanzapine, and 5.08 for haloperidol."

[dangilio in reply to Parkie-]

parkie maybe there is somithing worse that death and i pray lord that you don t understand what i say

[Parkie- in reply to dangilio]

Dangilio

Sure. Just wanted people to have the info, the whole picture.

Take care

[Alex2004 in reply to Parkie-]

Yes, thanks for sharing. We have been told there are risks but have started on a very low dose.

[Marimar70 in reply to Alex2004]

How has the low dose Seroquel worked for you? Looking into this for my mother.

[Alex2004]

Hi. My mum was only on it very briefly and it made her more confused. She does tend to react negatively to most things we try though.