Invega Sustenna Questions

Family
101

It’s so good to hear how well you’re doing and you’re able to work part-time. That gives me hope. Thanks again for sharing.

Yes, it’s unfortunate that some people do have to take higher doses and more often. It’s all over the map and so individual. I think to take what you need to get rid of the psychosis is the most important thing. I’m not a “the more meds the better” type of a person, but I think you just have to take what you need to get your brain as well as possible and be stable for a while. I think at that point it may be possible to taper down a bit, maybe… who knows. But that’s just my two cents. I’m fairly new to this. I hear many people have to take the highest dose possible to get a handle on their positive symptoms. I’m happy to hear your dose is so low and it’s working so great for you!

102

New symptom - the TV is talking to him.

Before the last hospitalization, people were talking to him through the TV - now, it’s just the TV itself it talking to him.

I asked him what it said - his answer? “Thank you for being my friend.”

Sad, but sweet. And, he said sometimes it tells him jokes, so maybe that’s what all the laughing is about.

But, he’s going downhill so fast. I’m trying to decide if I go to work tomorrow morning or stay here with him until his appt. I guess I’ll decide in the morning.

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103

When my son had the shot, it was very effective at first and then wained like that but do you think you could get a new shot to him on Monday?

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104

Yes, my son went from one bath to two baths a day. That is one of his ways to relax also. It was the sudden outbursts and damage that caused us to be alarmed. His voices seemed to be telling him to hurt himself. I don’t want to go into detail but I was frightened for him.

105

I have the shot sitting here with me right now, so I could technically do anything I want with it.
I could take him by an emergency center & have them administer it. CVS has a minute clinic thing - they might give it to him too.

But, I want to give it to him there.

He’s kind of admitted that the Invega made the TV stop talking to him before, and now that it’s talking to him again the Invega may have worn off, so that’s either a tiny bit of insight or he’s too out of it to do anything but agree with me.

We even talked about getting it every 3 weeks, and he said OK. Then he said sometimes the shot made him feel bad. Then changed his mind about that and said maybe we should keep a calendar with how he feels, which is a great idea and I told him how smart it was.

I guess that’s something. The paranoia & constant arguing aren’t there - but it’s like he’s on autopilot, a pacing ghost of himself.

His appt is about 38 hours away - and that’s going to be a long 38 hours.

I’m still thinking it’s just not enough. Here’s the timeline:

2 days of Invega pills (6 mg/day) to see if there are any side effects.
Day 1 - 230 mg initial injection along with 6 mg of Invega pills
Day 2-4 - 6 mg pills
Day 5 - 156 mg booster
Day 6-13 - mild delusions
Day 14 - right when the booster should have kicked in, he’s not talking about delusions at all
This lasts until a week before he gets the next shot - about 2 weeks, then the delusions start coming back & the 117 mg maintenance shot only holds him where he was until it gave out a few days ago.

If they want to try that slow, 6-month stabilization, I think he’s going to need it every 3 weeks.
That’s what I’m going to shoot for.

I really want to bump up the mg too, but I’m having 2nd thoughts since he said sometimes it makes him feel bad.

I’ve just gotten his 3rd day of pills in him, and other than he slept last night, I don’t see much difference.
Of course, he could be way worse without them, so it’s hard to know whether they’re helping or not.

106

It does sound like he just might be gaining some insight. Good luck!

107

I think that my son might be having Invega Sustenna withdrawal symptoms since it feels like the drug stopped working around last Wed.

I started looking because he started having pretty bad hand tremors a few days ago. He hands are shaky now & then, but this is pretty bad. I was thinking the Dr might see it tomorrow & think it’s from the Invega pills I was giving him, but over the past 2 months, he hasn’t been shaky like this.

From the withdrawal list, this is what I see that he has:

  • Anxiety - yes
  • appetite changes - he’s eating a little less
  • concentration - yes
  • confusion - yes
  • hallucinations - maybe auditory
  • insomnia - definitely
  • muscle pain - maybe - he’s been complaining about back pain since he went to the hospital the first time. he has a family history of lower back problems and i’m actually afraid that them tackling him & pushing him to the ground when he tried to escape may have done something.
  • restlessness - yes
  • sleep problems - yes
  • tremors - yes
108

In my experience, most of the pharmacy clinics won’t inject the med. Some pharmacies will do the injection but only if they are the dispensing pharmacy. When my son was getting injections, his case manager did call around and finally found a pharmacy that would do the injection without having dispensed the drug.

109

One of the ladies in my support group gets her CVS pharmacist to do it.

I told her they told me no. She’s an older lady and pretty tough, but she said she went in there and pleaded, then started crying until they agreed to do it.

I pick up his shot at our pharmacy, but the nurse at the county mental health clinic administers it. He has seen her before and she’s a nice older lady, so he likes her to do it - and so do I. They’re very concerned about being punctual with appointments so we don’t have to wait long and he says it doesn’t hurt much when she does it.

Plus, since it’s the nurse that works with all the psychiatrists they don’t have any doubt that he took the shot.

If I wanted him to have it bad enough, we have a couple emergency centers around. I’d just go there & pay for a dr’s appt.

110

We have done things a variety of ways. When he lived at assisted living, they did it there.

For a while we were going to community mental health with it, but most of the community mental health providers didn’t want to do it if they were not prescribing it, and we have a private practice pdoc. (The move I made that I regret the most is allowing a community mental health group to convince me that they should manage his care. The nurse practitioner then prescribed him Abilify and gave him a massive injected dose. We all suffered until that got out of his system! We went back to the private practice pdoc after that.)

We have also had home health come to administer it.

Never tried a stand alone emergency center. From past experience, I would not assume they would administer it.

111

So far, I like our county mental health center.

He has a case manager who has only been with him a few months, but she moved h*ll & high water to make sure the hospital stopped giving him the Zyprexa that wasn’t working & get him on this injection. Then, when they wanted to do the Zyprexa injection, she was on them again.

The pdoc is new since I took a long time deciding to switch him there. I had to switch him to someone new because he was still seeing a pediatric psychiatrist and he had came to a place where the doctor finally told us that he needed a different doctor because there were so many things he didn’t even look at.

But, I was pleasantly surprised. She talked to him for a long time and was very patient with him. She also explained that she would never prescribe him anything addictive (he self-medicates). We’ll see how it goes, but so far, I’m OK with them. My only fear is that they will be too conservative in his treatment, and I’ve never been afraid to aggressively treat when he’s acutely psychotic.

However, the most important thing is that he likes them. And, it is a big improvement over the last office where we would sometimes have to wait for hours to get in to see the doctor. Here, they have a sign up that if you haven’t been seen by 5 minutes after your scheduled time to come back up to the window.

That’s also a double edged sword because the old office was also very willing to work people in if they were having a hard time. I’m not sure how that works here, but I need to find out.

They also have an intensive program here that he can use once we get his disability approved. It includes more frequent doctor’s visits, a dedicated set of therapists, help with employment, housing, etc if he needs that, plus case workers that will come to the house for all kinds of things from med management to taking him out for job interviews or just to be more social. I know someone who’s son is in it, and the case worker is always picking him up for something.

I don’t know that we need all of that, but it’s good to know it’s there if we do.

That’s also his way in to the local clubhouse type thing that he could go do as a day-program kind of thing.

112

I wasn’t able to get any of the Invega pills in him yesterday, so now he’s had another night of no sleep.
That’s maybe 1 1/2 nights sleep in the last 5 days.

Of course, now that we have to leave in about an hour for his appt, he wants to try to sleep.

His mind has really slowed down. Even a simple question takes about 2 minutes for him to say anything, and I have to repeat the question 3 to 4 times.

I really don’t know if the shot I have for him is going to be enough to bring him back around. And, it’ll take another 5 days to find out, which puts me well into Friday with the weekend looming.

EDIT: Wonderful. He just looks at me and seems to force the words out: Where’s my baby bottle at?
That made no sense to me, but he’s recently been looking at old pictures, so I think maybe he wants to see what I saved from when he was a baby.
After I ask him what he meant, he says I didn’t mean that - where’s my Senecas? (A really cheap pipe tobacco cigarette he likes because it’s cherry flavoured.)

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113

You broke my heart with that post. God love him.

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114

The delusions are one thing. When those happen, his mind is going a mile a minute.

When his mind starts to slow down, it is heartbreaking.

You ask him something, and he’ll look at you like he’s really, really concentrating, but the wheels just won’t turn.

I had a few times today where I was a little worried about catatonia, then he’d snap out of it.

I really thing everything is a little worse because he’s in physical withdrawals from the Invega too.

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115

My heart goes out to you. X

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116

just a little update

my son went back in the hospital last tuesday. we went at his request, but he didn’t want to be there once he got there, so they did an involuntary hold.

they put him back on Invega pills to make sure the med was still working and it was a dosage problem - 3 mg in the morning, 6 mg at night. they also gave him 100 mg neurontin twice a day to calm his anxiety and progentin (?) for his tremors. he has tremors now & then anyway, but they were really bad when he went in from what I think was physical withdrawals from the shot leaving his system.

they said they’ll give him another shot tomorrow or wednesday, but I’m waiting to find out what dosage & if he’ll need to keep taking the pills for awhile.

on the phone with his case manager, he sounded like he was willing to take them this time, but we’ll see. his delusions seem to be dropping daily, but I know it’ll take a few more weeks for them to be mostly gone.

he sounded good and she said he looks a lot better than he did when she saw him last week.

hopefully, the third time in was the charm, and just as hopefully, this new intensive program will help keep him out of the hospital for the fourth time in a very short period.

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117

A couple of years ago, we were on that revolving track between home and hospital. I hope it improves for you.

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118

Just an update -

They gave him a 156 mg shot on Feb 7th in the hospital & put him on 12 mg orally each day.
He took the pills for a few days, then didn’t want them - and his outpatient pdoc didn’t want him to take them either, so the last day of that was Feb 20th.

He’s scheduled to get his next shot a week from today - and his appetite is slowly dropping, and he had his first night with no sleep. He said he felt a little tired & thought he’d be able to sleep sometime today, but that’s always the signal of a problem.

I’m going to wait until tomorrow to call the new team and see what happens today.

EDIT: He’s fell asleep on the couch just a little while ago, so almost 36 hours without sleep.
I’ve already talked to the nurse about another issue so told her about this. I told her I’d call her again tomorrow with an update. Maybe he’ll be able to wait until next week, but I don’t know what to think about the dosage. I don’t want him overmedicated, but I want him to have enough to be therapeutic too.

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119

@slw, I was wondering how your son is doing?

My son is still hospitalized, and will likely be through March (or so they tell me). They are starting him on the Invega Sustennna next week. He has been in the oral build up phase.

Hoping for a positive outcome for you and for him with this last hospitalization.

120

It’s a mixed bag.

He’s not paranoid, I don’t have any signs that he’s hallucinating or hearing anything, but his delusions are going in full force.

The shot is not lasting him a month, and his appetite and sleep both drop as he hits the 3-week mark.

Last time, he was on a 117 mg injection and it dropped hard & fast on him at just under 3 weeks and he ended back in the hospital on the day he was scheduled for his next injection. He kept asking to go, then didn’t want to be there, so they did the hold. They put him on 9 mg/day oral for nearly a week before giving him a 156 mg shot & bumping up the oral to 12 mg/day.

When he came out, he’d take the pills for a few days, then didn’t want to take them anymore & his outpatient pdoc agreed. That was 8 days ago, and the delusions have slowly increased as his sleep has slowly decreased.

To make sure he doesn’t go back to the hospital, they are going to probably give him his shot tomorrow instead of waiting for Monday, and maybe it will work. He’s not getting sick as fast as he did on the 117 mg shot.

My opinion is that he will either need 156 mg every 21 days or he’ll need to go up to the 234 mg shot. And, maybe he’ll even need that more than every 28 days.

When he came out of the hospital from the first injections (234 mg followed by 156 mg 5 days later along with 6 mg orally), he came home with random delusional comments, then it gradually went away and we had about 2 weeks that were great. So, I know it can work for him.

If it was up to me, I’d give him a 234 mg shot tomorrow.

So, the good since I’ve complained so much - he’s not angry, we’re not constantly arguing about his meds, he’s not paranoid, he’s fairly pleasant to be around, he bathes and changes his clothes - it could be much worse. I’m prepared for the gradual improvements over 6 months that people talk about, but I don’t see how that’s going to happen with monthly setbacks. I’m going to watch for that once I think they have him at the right dosage.

I do think he’s the exception. Most people do well on the 117 mg shot & many do well on less. He just seems to need the max of everything. We’ve even went above the recommended dosages on things a lot of times.

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