Update on my son's Invega journey

Family
1

Figured it was time for a new thread so here goes.

My son got his Invega Sustenna shot yesterday. I think it’s the 6th time & they upped him to 234 mg to see if it will hold him. For anyone who doesn’t know his situation, they gave him his 156 mg shot about 4/5 days early last month & it wasn’t enough to bring him back down from his manic stage, so he ended up in the hospital about 4 days afterward.

This hospital stay, they added 2 mg/2X a day of Risperdal & 150 mg/2X a day of Triliptal - it brought him back down to earth although the delusions still come & go. I really credit the Triliptal for him being able to be fairly stable right now since that seems to help him sleep.

So, along with the higher dosage shot, they took him off the Risperdal & upped the Triliptal to 300 mg/2x a day and he’s allowed to go to 3X a day with it if he needs it/wants it.

He’s actually taking his oral meds for a change. I give them to him twice a day & put them in a clear capsule so he can see them, but it’s still like he’s only taking one pill at a time. He makes jokes about throwing them away (in fact, he makes jokes all the time now - he’s a regular comedian) but takes them without too much attitude. I know it’s because of the Triliptal to keep his mood stable.

He still doesn’t have the type of insight I would like, but he admits he has problems sleeping sometimes if his thoughts start to race (he just doesn’t recognize the things that make his thoughts race are delusional) and that he has bad social anxiety so that’s enough to keep him in treatment for now.

He still paces like crazy at times and he smokes like a fiend although he’s talking about cutting back,

All in all, I guess I’d count these as good times, although if side effects rear their ugly heads or if he suddenly refuses to take anything for whatever reason, I know things could go bad very quickly.

At least maybe I won’t get the police called anytime soon - in the past month, I’ve gotten a speeding ticket, had a toll violation, my son got the police called twice - and someone called the cops on me for leaving our dog in the car with all 4 windows down and running into the store for about 5 minutes to get his fancy Fresh Market chicken jerky treats that cost about $10 for 1/2 pound packet. Everyone was very nice each time, but that’s more contact than I’ve had with the police in years.

7 Likes
2

Thank you for updating. I really like reading your posts and was wondering about your son’s health.

I’m glad your family is having relatively good days.

4 Likes
3

I probably post twice as much or maybe even more when things are bad than when they’re good.

The doctor (ICT program) talked like he had a long way to go, but I’m seeing some improvement so I’m happy. I’m still feeling the program out, but this time, they talked like they will gradually try to pull him out of his comfort zone a little to get him more functional and independent. Social anxiety is his most severe, chronic & persistent symptom - other things may come or go, but that one is a constant and no med seems to touch it except for when he was abusing opiates years ago.

As long as we can prevent his long periods of absolutely no sleep (mania?) that puts him in the hospital, I can live with slow & steady.

4 Likes
4

Sleep is so incredibly important. I’m glad that is happening.

One of the main ways experienced professionals interact with people who have psychosis is in little bits at first, then slowly build trust in order to help the patient open up and talk about patient’s own goals. It can take months or years to earn a person’s trust. I am thinking the team working with your son knows this and is building trust so they can all work together with your son as the team leader.

Yes, slow and steady:)

3 Likes
5

I’m really glad to hear this. I sure hope it continues for you both. I’ve been thinking about you take care

1 Like
6

And, how’s your son doing?

I hate to ask because since we’ve been talking my son does bad when your son does good & vice versa.

1 Like
7

He won’t take his shot and is doing weird stuff like calling and getting to District Attorney because I don’t give him his money. That was our morning going over receipts and we were able talk that through. And he was no longer angry. I was exhausted today and slept a couple of hours mid day. He is staying at his apartment above the office.
I thought today he would agree to his shot but no. Waiting for other shoe to drop and trying to hold onto my life the best I can. I’ll try to get out with him tomorrow. It’s going to be a rainy weekend.

8

My son is still taking his meds & getting the shot, but asks why he has to take them if he’s not “broken”.

Paranoia & anger are absent, but the delusions are mostly still there.

This is still a transition month - going up from 156 to 234 mg on his Invega Sustenna, taking off the 4 mg/day Risperdal the hospital added, upping his Triliptal from 150 mg/2x a day to 300 mg/up to 3x a day.

I’m just kind of waiting & watching.

Today, he wasn’t feeling so good, but I talked him into going to a saltwater aquarium store neither one of us had been to. It was awesome! We only stayed about 45 minutes, but the guys running it couldn’t have been nicer and the fish were amazing. A lot of them would follow your finger around the tank, and they had a mean 28-year-old clown fish that we barely got to see.

She hid in the anemone & would just peak out. If we made eye contact she would quickly retreat. We wouldn’t even have noticed her, but one of the guys told us to be careful because she was old, mean & likes to bite. I thought he was just joking, but then I started to look for her and finally saw her just a little. He said if you put your fingers in the top of the aquarium (above our heads), she’d come up & bite you - and she’s drawn blood.

I was amazed a fish could live 28 years.

So, now we both want a salt water tank with a reef system. I’m sure that means lots more trips back to this store & others as we learn a little more about it. On the way home, he said we had enough animals to take care of, but I pointed out I never get to pick out our pets - just help care for them. So, maybe we’ll add this to all the dogs, cats, rabbits, chickens and rats we have right now.

The high point was that he admitted that even though he didn’t want to go, he was glad he did & he was pleasantly surprised by how much fun he had.

We also got fresh homemade kettle corn (in sweet/salty, cotton candy & cinnamon) outside a little flea market place & grabbed ice cream through the Dairy Queen drive-thru. So, all in all, it was a pretty good day even if he felt a little depressed to start.

2 Likes
9

Good job getting him iut if the house

1 Like
10

Does anyone have any experience with Invega vs. Risperdal?

My son is still doing OK, but he has one delusion that troubles him that weakens when the meds work & comes back hard when they aren’t working so well. He gets pretty obsessive about it, and I think it leads to racing thoughts & less sleep.

As I mentioned, they upped his Invega & dropped the Risperdal a week ago. The shot should be fully effective by now, but this #1 delusion is quickly taking over.

I know the 2 drugs are very similar, but just wondering if anyone else had better luck with RIsperdal.

11

@slw, I really enjoyed this update. It encourages me to not let my son say no to going and doing things like this. Thank you so much for sharing.

12

@jmarie1067 - I let him say no.

In fact, we both got ready to go & he said he didn’t want to do it. Then he said he’d go because I seemed excited about it and wait in the car while I went in. So I said I’d just wait for a day when he wanted to go.

Then, somehow about 30 minutes later he said he’d go & go in. I don’t know why he changed his mind, but he did.

Wild horses couldn’t drag him into a place he doesn’t want to go, so I have to let him have control. But, I will use this experience to remind him that sometimes he can be pleasantly surprised if he pushes through, and I’d always let him change his mind at the last minute, or leave if he wasn’t comfortable. Otherwise, the pressure & stress would only make his psychosis worse.

Today’s another not-so-good day for him.

I’ve been waiting for the past year for the mania to end and the depression to start if he’s more BP than SZ. Every time I thought it was here, it only lasted a day or two, so hopefully this won’t last.

It’s a week after a med change too, so that’s scary - upped Invega to 234 mg, dropped 4mg/day Risperdal completely & upped Triliptal from 300 mg/day to 600 mg/day with a target of 900 mg/day.

So now I have no idea if it’s the suspected med change, if it is which change, or if it’s just a normal cycle that’ll be over in a few days.

13

We are only in our third month of 156mg (his first time being compliant with any medication - ever!), and month 2 was augmented with risperdal while he was in the hospital. Although my son does not appear to struggle as much as yours…from about day 18, we started to see breakthrough symptoms. His sleep lessened to a point of one night staying up all night, he would pace most of the day, experienced racing thoughts, struggled at times to finish sentences, and really started to get delusional by day 24. We made it to day 28, I voiced my concerns to his med provider, his therapist, etc.,…only now is where the rubber meets the road in my situation. This next shot is without the conditional release criteria…and is not court mandated. He will need to choose this one on his own. I scheduled the appointment…and we will see whether he chooses to comply after this or not. In our case, he knows I will not let him stay with us unless he takes his medication. If he chooses not to take it, he chooses homelessness.

I am so glad to hear you both had a nice time at the aquarium. I am going to see if I can get my son to go to a museum with me.

14

I start to see a decline in effectiveness around day 18/19 too.

They refer to it as breakthrough symptoms, but going manic & staying up for 5-day stretches feels like more than a breakthrough symptom to me.

15

My son got really worked up about “we have no free will”, had a bad night, & then didn’t sleep at all last night.

He said he’s really tired & sleepy, but he’s said that before & not slept.

I’ll give it one more day before I call the doctor, who will most likely do nothing because it’s not like they can pull that 234 mg of Invega back out of him.

Now I’m wondering if it was really the Risperdal even though it’s closely related to the Invega that helped so much instead of the new Trileptal - or if he’s just always going to do so much better in the hospital then be on borrowed time at home.

16

Risperdal has seemed to help my family member.

17

If things don’t change quickly, I’ll be calling to ask about adding the Risperdal back - even if he is on the 234 mg Invega shot.

He’s been up somewhere over 33 hours now (counting from when I got up yesterday, but he was up & looked like he had been up for awhile. had taken a bath, gotten dressed, etc.). He looks tired, said he was tired this morning, but when I asked him about it a few minutes ago, I got the “I don’t need sleep” answer.

I really, really, really don’t want to see him go back to the hospital for the 5th time in 9 months.

I’ve got the Risperdal to give him, but I’ve kind of decided I won’t do it without the doctor saying so. I feel like I’m almost training them in how fast he can go downhill when they change what’s been working - even if it’s only worked for a short time.

Hopefully, he’ll sleep soon - and sleep long enough for it to matter - and I won’t have to do anything.

1 Like
18

I think it’s worth it to at least ask the doctor. I also would not give any med the doctor didn’t prescribe or know about, for a bunch of reasons.

Hoping he will sleep.

19

I know it’s a bad thing to do.

I just get desperate when I watch him go from good to so sick he qualifies for an involuntary hold in a week or less.

I’m afraid that at some point, that hold won’t happen and something really bad will happen.

This last time, he was so out of it after 8 days of pretty much not sleeping at all that he was stumbling around & every time I turned my back, he’d be out in the middle of the road.

We live in a subdivision. The speed limit is 25 when people obey it, but you can’t expect drivers to be prepared for someone to be on the side of the road one minute & walk out in front of them the next.

He also tried to get out of the car while it was moving at high speeds several times, he drank something that was pretty harmless but he was sure it poisoned him - next time, maybe he’ll drink bleach or something.

Every time he’s hit a downhill slide over the past 9 months, it’s been worse, so I can’t say I won’t do something in desperation at some point. It would be one thing if he was non-compliant, but he’s not. He’s taking his shot. I give him his pills twice a day, he takes them, drinks whatever I bring him, then we sit and talk so long that I would know if he was cheeking them (caught him doing it once.) And, he’s not neat enough that I wouldn’t have found evidence by now.

At least before I had hope that if I could get the meds in him, he’d be OK. Now, I feel like we’re headed towards clozapine as a last hope.

1 Like
20

There are two reasons I wouldn’t get meds into anyone by any means necessary:

One, I value my family member’s trust deeply. Long before the illness, I made a commitment never to lie to or deceive. So, a lifelong choice, not a recent one.

Two, I have been deeply desperate for the safety for my family member during psychotic episodes. Slipping meds into someone’s food or drink is not sustainable in the long run, but I can understand trying to get someone through great difficulty. I just wouldn’t do it myself.

(And three, when done to a person with paranoia, any misdirection could lead to lasting mistrust and increased paranoia.)

Like I said, I understand how desperate you are and why your son needs treatment. Something truly terrible did happen due to my family member’s psychosis.

The only way to consistently get meds into someone who really needs them for their safety and the safety of others is court order. Only a court can grant the doctors the legal protection doctors need to proceed. Technically, it is illegal to treat a person against their will UNTIL a judge steps in.