An injustice by pharmaceutical and medica... - Cure Parkinson's

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An injustice by pharmaceutical and medical community...

davidt826 profile image
12 Replies

Tell me how to ween my wife off of Nuplazid. My wife has been on this at the recommendation of her neurologist for over six weeks. If all that was printed in this article is true and accurate, then a great injustice has been done by the pharmaceutical and medical community. We have been so much in hopes of finding something that would help my wife with her Parkinson's hallucinations, delusions and illusions.

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davidt826 profile image
davidt826
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12 Replies
jeffreyn profile image
jeffreyn

Hi David,

I don't have an answer to your question, but maybe I can help sort out the context.

I'm guessing that your post is in response to a recent post by park_bear, and therefore the "article" you refer to is this one:

sirf-online.org/2018/07/09/...

Jeff

davidt826 profile image
davidt826 in reply to jeffreyn

Thank you. This has been a surreal journey with this med. We were told it would take six weeks for it to get into her system and results could then be seen. NOT SO. When I asked about it I was told that after six weeks the effects of Nuplazid would be realized but now we're eight weeks in and it seems that other issues have developed or become more intense. Fortunately, one hallucination has "gone away". It really bothers me that other humans would mess with people's lives in this way. I know that money and power can really corrupt the way people think and act. So sad.

park_bear profile image
park_bear in reply to davidt826

It would be helpful to know which other issues have developed or become more intense.

Re quitting, from the label, FWIW:

"Discontinuation of therapy: The American Psychiatric Association (APA), Canadian Psychiatric Association (CPA), and World Federation of Societies of Biological Psychiatry (WFSBP) guidelines recommend gradually tapering antipsychotics to avoid withdrawal symptoms and minimize the risk of relapse ... When stopping antipsychotic therapy in patients with schizophrenia, the CPA guidelines recommend a gradual taper over 6 to 24 months, and the APA guidelines recommend reducing the dose by 10% each month"

davidt826 profile image
davidt826 in reply to park_bear

Thank you for the information. Received an email from my wife's neurologist today about weaning off of the Nuplazid. She told me there was no need to come off of it slowly but that she could abruptly stop. I thought that odd as the company providing us with Nuplazid explained that it had to be tapered. I'll be calling them to find out how they recommend doing this but I'm getting to the point that I don't know who to trust on this.

Her neurologist fluffed the report off saying she had read the opposition and disagreed with it. I did read in one article that Acadia Pharmaceutical was giving incentives to physicians to promote Nuplazid. If so, what a disappointment.

davidt826 profile image
davidt826 in reply to davidt826

I missed your first question about, "other issues have developed or become more intense". I have noticed that her confusion has increased to a new level and that her anxiety level seems to be ramping up. However, there were some hallucinations that she says are no longer present. Her mornings are the best time of her day but after her morning meds, she progressively through the day will begin to slow down, show more signs of confusion and delusion. By the evening she's ready for bed. It just seems that most of her previous problems were intensified.

DEAT profile image
DEAT

Thank you Jeffreyn and davidt826 for bring this to our attention.

This is a shocking thing to read and

very sad.

rideabike profile image
rideabike

The SIRF "The Investigator" report is downright frightening but it stands to reason that where money and power are concerned, power corrupts and if the usual safeguards are letting us down because of a "change of policy" we can expect more of this which is why I say frightening. Thanks for bringing attention to this and I hope you can make the withdrawal as easy on your wife as possible. She is very fortunate to have such a caring husband looking out for her.

davidt826 profile image
davidt826 in reply to rideabike

I agree that this is very frightening. You are so filled with hope for a medicine that will make a difference only to find that you may not be able to trust the people who are in the position to approve or disapprove new medications. It's hard to trust what appears to be untrustworthy.

She's been the love of my life. Can't imagine doing anything else but make her life the best it can be.

parkie13 profile image
parkie13

If you click on more up above on the drop-down menu you will get search. Search for hallucinations, help. DONZIM has written extensive post on her husband's hallucinations. Hope that can help. About the tapering off I have no idea.

davidt826 profile image
davidt826 in reply to parkie13

Thank you for your suggestion. Went there and found a treasure of information. It will take a bit of time to read through it all but I will glean all the information I can.

HeartSong profile image
HeartSong

I am so sorry that your wife and you are going through this. I'd like to suggest that you find a new neurologist if possible.

SilentEchoes profile image
SilentEchoes

Your experience is a lesson for all of us - just because a doctor prescribes a pharmaceutical drug (this is not medicine IMHO) does not mean we should take it. Factcheck everything, read the package insert, check drug interactions etc. It's your health and you are in charge. Most of us come from a generation where we didn't question our doctors opinion. The internet changed the power dynamic and opinions are challenged-this is unwelcome by most practitioners.

I might stray off topic here, but it's important to understand that neurologists inherently have conflicts of interest and I believe we are unknowingly participating in drug trials when we agree to follow their recommendation. It's a pretty sneaky way to get patients to pay for research on drug safety and efficacy. You only need to consider how many drugs were brought to market and later found to be unsafe.

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