Hallucinations & Delusions - Psychosis

My friend of nearly 50 yrs was diagnosed with Parkinsons some 14 yrs ago. He has courageously soldiered on and tried to stay active in mind and body. Sadly, he has had a couple of falls in the last 12 months - broken wrist and some cracked ribs - recovered now but the latest real set back has been hallucinations/delusions and paranoia. This is really bad and he is currently hospitalised whilst the inevitable reduction in Parkinsons drugs aimed at motor symptoms is monitored. In the UK, there is no really effective drug (antipsychotic) that will not affect the motor symptoms. In or before 2016, Nubrazil (Pimananserin) was approved for use in the USA. I read somewhere that it has been trialled in the UK and has progressed to trial stage 3. There is no argument about its efficacy, it works! Some trials were ended early due to the all too obvious results showing that beyond doubt it works. Only 8% of those on the trial found that they could not continue taking this new drug. Two questions really: 1) It is widely accepted that this drug must be approved for use in the UK so why the delay. 2) I seem to remember reading somewhere that the only way to get this drug in the UK is to gain admittance to a UK care home based trial which would necessitate a respite stay of 4 - 6 weeks. How does one go about getting on to a trial including locating a nursing home that is currently trialling this drug?

HI @workaround

Welcome to the forum, I am sure you will receive many replies, however in the meantime could I suggest you take a look at the research section of the website - https://www.parkinsons.org.uk/research.

Kind regards

Sue - Moderation team

Hi @workaround, :wave:

Glad to see you’ve already been welcomed to the community by Sue.

To answer your questions specifically, Nuplazid (pimavanserin, by Acadia Pharmaceuticals) is approved to treat Parkinson’s-related psychosis in the United States and as you said, it is currently not approved for use in the United Kingdom. We have recently been in touch with Acadia and they have told us that they are still evaluating strategies for commercialising the drug in other countries and unfortunately they do not currently have a timeline for when this will occur.

I am not aware of any ongoing clinical trials happening within the UK. We will continue to monitor this subject.

You might be interested in a clinical trial we are funding that is looking at cannabidiol (CBD) to see if it can help with Parkinson’s associated psychosis. More can be read in this blog post. We are hoping that recruitment to this trial will start in the coming months.

To stay up to date with research news and opportunities, you can sign up to receive regular emails through our Research Support Network.

If you have any further questions please do email [email protected]

Best wishes,
Forum Community Manager