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I can't say enough good about Nuplazid, the newish drug for psychotic symptoms in Parkinson's patients, or the company that makes it. 70% of Parkinson's patients that live 20 years will experience psychotic symptoms. I am a family member of someone with Parkinson's. Since I sound like a cheerleader, I'll share: I have no professional connection to Nuplazid.


There is a program/number to call at the company that makes Nuplazid, Nuplazid Connect. 1-844-737-2223. They are amazing. For my sister the medicine is paid for by Medicare Part D (prescription insurance) even though she is on hospice and it is considered aggressive treatment. (Hospice turned it down.) The $400 a month copay is paid for by a foundation. Our cost for the $40,000+ a year med is $0. The company said if we could not get it covered by insurance they would pay for it for a year. (God knows what happened if the patient lives longer than a year.)


My sister was on Nuplazid for a month in late 2016 and it was a miracle. She was completely free of psychiatric symptoms. I did not have POA and I was not yet her guardian and it made her feet swell. She was unable to accept this and then she was on again, off again, with Nuplazid for two months (she would stop taking it when her feet swelled and then start taking it when her psychotic symptoms got bad again because she did not want to be hospitalized. This is not how you are supposed to take that drug.)


Fast forward- she was at the ER in May 2017, and was not admitted despite a psych eval. When I said to the psychiatrist "You are sending me home with an unmedicated psychotic," he prescribed Seroquel. Seroquel takes the edge off and keeps her out of the ER/hospital, but poorly controls her hallucinations, delusions, auditory hallucinations and paranoia. This in turn causes problematic behaviors like yelling, trying to leave, refusing to go in her room, and mild aggression. (Like kicking someone in the ankle- but she is tiny- they are not in any danger.) She also sometimes has an uptick in agitation about 45 minutes after taking the Seroquel and then may need Ativan. The doctor is not taking that uptick in agitation seriously. IMO these meds need to be managed by a movement disorder specialist/neurologist or a psychiatrist PERIOD, something that is not available to a hospice patient. One has to have seen many Parkinson's Disease Dementia patients before one can claim expertise because they are all so different.


In mid 2017 I became her guardian and moved her in to memory care. I finally got her primary care physician on board with trying the Nuplazid again because nursing homes are turning her down for behavior. I spent many hours last week getting the cost covered with the help of the drug company. Now I must wait and see if it works as well as it did a year and a half ago. She started the medicine yesterday. It takes 7-14 days to kick in.


Best practice is to have an EKG before starting it. Many doctors do not know this. It must only be started with a healthy heart as in rare cases it causes arrhythmia. She is still on Seroquel too, which is not ideal- this increases the chance of heart problems. But if we discontinue the Seroquel before the Nuplazid kicks in she will probably end up in the hospital. The EKG will be repeated after one week on the Nuplazid and the Seroquel. A second EKG is not needed for Nuplazid alone. Once the Nuplazid kicks in the Seroquel can be tapered and hopefully eliminated. I concur with a person on the forums who said that with these degenerative/terminal illnesses black box warnings and other risks may be weighed differently. This is the last month we can pay for the memory care and she must start at a nursing home medicaid pending. (Please no doom and gloom advice about needing to have started this process earlier - I am WELL aware. I have been working on this in earnest since March with little progress. I consider the Nuplazid my hail Mary pass.)


My problem is that every decent nursing home sent her medical records simply rejects her. It has been a rude shock that someone who yells briefly once or twice most nights, says they have to leave and walks down the hall two or three nights a week, with the whole thing blowing over in 30 minutes to two hours, and kicks someone in the ankle every 6 weeks is nearly impossible to place in a nursing home.


There is a huge hole in the system- there are very few places set up to take medically complex elders and disabled people who also have psychiatric problems. They are set up to take one or the other. In many parts of the country there is a nursing home bed shortage or the nursing homes aren't up to snuff, and there are long waiting lists to get in the better ones.


If one more facility says "We would take her if she couldn't walk" I may scream.


The saddest thing is, this could probably all be taken care of with CBD oil. But that's another topic.