Nuplazid & experimenting in the midst of a pandemic

[Aurala]

So I was overjoyed when the neurologist suggested trying Nuplazid for my husbands hallucinations. Picked up the samples from the office building wearing mask & gloves. Although the doctor had said give it mornings, I called & asked if we could start that afternoon. He called back at 5 and said yes. I asked what possible side effects I should look for and he joked, poverty( no generic so ultimately very costly). Gave it to him after I got off of the phone(5:15). He wanted to get up from his recliner at 7:39, but not for bed but I asked to give him his usual meds first( Seroquel & very small dose of clonazapam). He agreed and by 8 we thought he agreed to go to bed. Walking in was more difficult and he was hunched over. When we got to the bed that wasn’t what he wanted. When he finally less horizontal he was almost catatonic and moaned a bit. Maybe 20 minutes later he was up again, hallucinating worse, now insisting he wanted to go home ( we are home), and somewhat aggressive when thwarted from getting up ( he’d only fall and take me or whomever with him at that point). I tried small amounts of lorazepam not sure how much of the 4 .25ml doses he actually ingested & still he kept going ( and he’s strong). Finally, our son got him to the bathroom where he wanted to go at that point & to bed at 12:15. He’s been sleeping ever since. All the while he knew who we were and could tell you where he lived. This was more than what we’d seen prior to the Nuplazid.

We decided no new meds or dosage changes for now. With the pandemic there’s no place to turn . For now we may just need to keep him more sedated when he gets restless or agitated as he’s been getting a few hours a day this past week rather than risk a hospitalization.

Nuplazid , a Parkinson’s approved drug,is off label for PSP. Anyone had any experience with it? Not sure if one dose did this or if one can get accustomed with use, but, for now, we are one and done. Now to tell the neurologist.

[Kevin_1]

Hi Aurala

I'm sorry, this one is new to me. You have probably done your research, but here is a link saying a little about it.

parkinsonsnewstoday.com/nup...

I really wanted to reach out and say that I recognise the enormity of what you are going through and wish you the strength and support to keep going in these straightened times.

You sound rather amazing as a wife and carer.

Warmly

Kevin

[Aurala in reply to Kevin_1]

Thanks, Kevin. From what I’ve been reading you are pretty amazing yourself. I hope that your wife is well. We are all just dealing with what we have.

I did read the link and found it helpful. The drug package insert is hard to parse. The doctor acted as if there would be no side effects, but I realize that it’s off label for PSP and there doesn’t seem to be any data.

You take care and do stay safe yourself. I’m sure that’s what your wife would tell you.

[Kevin_1 in reply to Aurala]

Thank you.

There is some crossover on Parkinson's and PSP/CBD. Which is why I gave you a link to a Parkinson's site.

I really hope it works for you.

:), yes she would.

warmly

Kevin

[Aurala in reply to Kevin_1]

Thank you, again. Bad reaction to the first dose, so no more experimenting during this health crisis. No hospitalization is the most important thing.

[Hidden]

One never knows where, what, how or when PSP/CBD will throw a new curve at you. The need to adapt to each new situation adds to the stress and exhaustion. Throw in a pandemic just to spice it all up.

You are doing the best you can. That’s all you can do.

[Aurala in reply to Hidden]

You encapsulated the path that we are on perfectly. Nobody knows, so you just try to find your way in the dark.

[Tippyleaf]

Dear Aurala

My husband was prescribed Quetiapine another atypical antipsychotic medication. I was warned it would have a significant sedative effect which initially it did - the first time he took it he was almost caratonic on it but very quickly acclimatised requiring 3 incremental. Dose increases. It reduced his paranoia, aggression and nightmares hugely - he had only infrequent hallucinations perhaps 2 per week . The first night he took it I sat up with him all night convinced he was too sedated.

For us the Quetiapine was a godsend and after 6 weeks I had a little bit of my husband back.

Your husbands reaction sounds much more extreme and I would definitely speak to neurologist and take advice . The idea of an antipsychotic sounds a good one but perhaps this is not the right one for him??

I do hope you find the pharmaceutical support he needs to get a balance in life. These are such huge challenges to manage - I feel for you

Love Tippy xxxx

[Aurala in reply to Tippyleaf]

The Nuplazid definitely exacerbated symptoms, made him nauseas, kept him awake and had other strange side effects. He won’t try it again for now ( health crisis means anything to avoid a hospitalization.).

He does take the quetiapine ( Seroquel) , but I reduced the dosage when he was doing better for several weeks, however the hallucinations have reared up again. How did you arrive at a good dosage and do you keep it at the same level regardless? I do worry about when he seems too heavily sedated.

[Kevin_1 in reply to Aurala]

Hi

Agreeing with Tippy.

Qutiapene like all of the atypical antipsychoticsmust not be reduced if the hallucinations stop.

That is a common mistake.

After about year, very carefully staged reductions might be tried.

Getting the balance between sedation and reducing the hallucinations is more of an art and it takes an experienced clinician to get it just right.

And, the sedation does reduce after the patient adjusts.

The sedation with it is horrid. It is used too often with elderly people with severe behavioural problems in homes. It is often the sedation which is doing the work there. It's now not recommended for that use in the UK.

Reading this site it appears that hallucinations with PSP do often ameliorate as the illness progresses.

Having spent half a lifetime working with people with hallucinations from psychosis I found that explaining that they were not real and supporting them when they were experiencing them, went a long way to reducing their need for complete control with medication. Also hallucinations which are not distressing are not really a problem.

It's such a difficult one,

I hope this helps a little.

Best

Kevin

[Aurala in reply to Kevin_1]

Yes, it does help. This only began 6 years in and he told me about them ( wasn’t acting them out) and though he knew that they were real, they were no less frightening. However, when they are worse, he acts them out and that’s when he gets aggressive. Will be trying to tweak the Seroquel looking for a sweet spot.

[Kevin_1 in reply to Aurala]

Good luck Aurala

It must be an added hell in terms of providing care.

Best to you

Kevin

[Tippyleaf in reply to Aurala]

We were given a titration chart increasing dose every 2 weeks. We found that when the aggression and impulsivity lessened to more manageable levels we settled at that dose. I was very keen he was not over sedated. It helped a little with sleep enabling him sleep for 1.5 - 2 hrs at a time but never made him drowsy in the daytime - much to the Psychiatrists surprise. My husband said he felt less angry and we noticed he could enjoy things more and remember pleasure which he had not been able to do for 3-4 years. We were warned not to wean or stop the Quetiapine without discussing first.

Agree this is such a challenging time to make medication changes please note my only experience was with my husband Kevin has considerably more experience in this area and makes valid points

With best wishes

Tippy

[Aurala in reply to Tippyleaf]

Thank you. So helpful. Was down to 37.5 mg at night when hallucinations returned. Trying 25 in the late morning ( usually starts 2pm) and 50 pm. It’s the sedation that gets me worried, but I guess it beats restlessness & aggression in these uncertain times.

[HilsandR]

Your post is interesting, Aurala, because my husband's neurologist was not an advocate for treatment for hallucinations in patients with PSP but would consider only in the most extreme circumstances. Rod's hallucinations ranged from a boa constrictor on our patio, snakes around the house, an elephant that was a regular visitor, you name it, he saw it, it was like living in a zoo. He could describe in detail the little girl he saw playing at the bottom of our garden. I learned very quickly not to dispute what he was seeing and to go with it and by doing that things remained relatively calm.

The worst part was his delusions when he could become quite aggressive. For a man who could barely lift a cup, I often displayed the bruises on my arms where he gripped me so tightly it was impossible for me to loosen his grip. Now this is the bit where I'm not prepared to go into any more detail but a drug he was prescribed for those delusions, which I really did not want him to have, did him more harm than good. You see, I always maintained that along with PSP, Rod also had some form of dementia and I was aware that some drugs should not be given to those with dementia - but of course I was just my husband's carer, what could I possibly know about drugs and their possible side effects, so I may as well have voiced my concerns to the frogs in my pond for all the notice that was taken.

These neurological illnesses are no easy ride for carers, the patient nor their medical team to be honest because as we know there's no treatment for PSP, there is still so little known about the illness, though I am sure research is moving along nicely, so quite often anything prescribed is a 'let's wait and see what happens' scenario.

Best wishes, it's a rocky road.

Love Hilsx

[Aurala]

You are correct about the wait & sees. And, yes, some form of dementia goes along with this disease. They gave my husband haldol in the ER which is contraindicated for any Parkinson’s and he had a bad reaction physically and mentally and yet it’s been suggested since. No way and now I know that the Nuplazid which I’d hoped would rid him of the hallucinations and all attendant problems ( restlessness & agitation & aggression) is not good for him although the neurologist thinks it should be revisited in a few days. No more experimentation during this crisis for sure. Originally, this neurologist said that hallucinations aren’t typical in PSP.