Invega Sustenna Questions

Family
21

I posted a little bit on another thread, but thought I’d give you guys an update.

Today makes 28 days since my son’s first Invega shot - he’ll get his first monthly injection next Friday.

So far, he’s had no side effects other than he has a very healthy appetite now. He’ll eat healthy just as easily as eating junk, so I need to change our shopping/cooking habits a little bit now. That’ll be good for me too.

He does sleep a lot, but it’s on & off, and when he’s awake, he seems perfectly alert and attentive.
His current job aspiration is to get a CDL license and be a truck driver (not sure if it’s possible, but it gives him hope, so I’m going with it.) Almost every day, we go out and he practices driving a little bit.

Today, he asked me if he could help me make dinner. Then, he said he wanted to make dinner. Next, he wanted me to leave and let him try it on his own (that’s his new thing - for me to just let him try on his own). So, I went away and he finished the first 2 dishes and almost finished the third before his motivation gave out and he said I could take over.

That is like night and day from a month ago.

We’re getting along very well, we’ll watch movies together or play cards sometimes - it’s been really good so far. I am, however, still waiting for the other shoe to drop. He has had some days where he seems pretty anxious or depressed, but he won’t take any prescription pills, so I’m just letting that go.

One thing I’m not happy with is the level of support outside the hospital. He met with the case worker & pdoc a few days after he got out, then they set his next appt for Jan. 31st. That’s fine for meds, but he needs some therapy and they’re not offering anything because they want him in this intensive program that he can’t get into without Medicaid.

So, I’m talking to him about going back to see one of his old therapists that we liked, or attending a local support group that meets 3 afternoons a week – something so that he’s talking to people and stays engaged in getting better. He started talking about seeing the therapist he was seeing at the mental health center before they moved him out of the substance abuse program - he had a lot of obsessive delusions about her, so I’m hoping that doesn’t happen - although, part of me is curious about how it would go now.

Anyway, overall, the shot has been very successful so far for my son.

4 Likes
22

Very good news and great to hear all his improvements! My son is on the Invega Sustenna as well and it’s a HUGE improvement from May when he hit bottom. My son has some side effects but he’s finally getting his dose lowered next week from 156 to 117. It makes me a little nervous but I’m hopeful it will be okay and some of his jerky movements and things will get a bit better. Time will tell.

My son wouldn’t ever go to a group therapy, and he won’t even go to one-on-one counseling at this point. I keep trying but I don’t like to “poke the sleeping bear,” if you know what I mean. I’m enjoying the peace and I just make him mad when I talk about it. I’m not crazy about the doctor/case worker right now and I’m hoping to find a better place for him in the next few months. He doesn’t like change though and he’s comfortable there. I just know the care could be better so I’m conflicted of what to do.

My son also takes 10 mg of Abilify daily. I remind him if he forgets. I really want him to try some Lexapro or something else as well for social anxiety and his inability to really get anything accomplished. He can’t or won’t do anything with his time. But again, the doctor he’s seeing right now - how can I say this nicely - I don’t have much faith in. He’s very limited to where he can go because of his insurance and it’s hard to find someone to take Medicaid where I’m at.

My son too gets a bit depressed sometimes, anxious others, but all in all I love the Invega Sustenna. Never have to worry about him pretending he’s taking meds when he’s throwing them away!

Thank you for sharing! Best to you in the new year!

1 Like
23

My son’s been prescribed Trintillex for depression/anxiety, but he won’t take it. He took it for 2 weeks in the hospital and I thought it had done him some good, but he said it made things worse.

I get you on not pushing. His therapist talked him into some group therapy last year, and he went twice. It caused so much anxiety for him that it was the beginning of a big downhill spiral for him.

However, in the hospital, he went to groups to be compliant and show that he was ready to get out, so I think he might be able to do it now. We have a place here called “Friends for Recovery” - it’s all peer operated, it’s open 3 afternoons a week, and they have classes, group therapy, etc. If it becomes too much for him, he can leave or go hang out on the porch and smoke. We talked about it and he said he might appreciate it more now.

Either way, it would be good for him to just be out of the house a day or so a week and have some other people to talk to. He’s been a couple times before and mostly smoked outside. There was another person there who was about his same age with similar problems one day - they hung out and took pictures in the woods for the afternoon. Just making a friend would be good too.

1 Like
24

Your “Friends for Recovery” sounds perfect. Even if he just stays outside and smokes, he’ll probably eventually meet a few people and hang out with someone while he’s there. I think “belonging” to something is always a good feeling, where you fit in and belong. My son likes that even if he doesn’t hang out with anyone outside of it. Just the clinic he goes to, when he walks in they say hi to him address him by his name. I can tell he really likes that they know who he is without him telling them. Strange, but an observation I’ve made. (One of the reasons I’m mixed about switching doctors and stirring up the anxiety of getting to know another one.)

It makes me sad about the isolation. My other kids (older and not living at home) tell me that it’s probably more painful for me to watch than it is for him. Not sure…

I’m on the west coast. Not sure if they have a “Friends for Recovery” here. Maybe you’re not even in the U.S., not sure. I know of NAMI meetings here but that’s it so far. I think I’ll check though. Thanks.

1 Like
25

I’m in Virginia and the Friends for Recovery is local.
They’re a non-profit, but one person started it.

This is their website:

I’m pretty sure it’s listed on our state’s NAMI site, so maybe there is something similar near you?

1 Like
26

Thank you. I’ll check into that.

1 Like
27

Really good to know this. I am hoping my son will get on the shots again too. I’m happy things are going well there.

1 Like
28

Next shot is Friday & either a little bit of delusional stuff is slipping through all of a sudden, or it’s slipping through enough that he feels compelled to talk about it.

I think I’ve read a few people say the shot starts to wear off a little before the next one, so we’ll see how it goes this week. Thanks to you guys, and the people who posted that kind of experience, I don’t feel the need to panic and think the meds aren’t working - although I am a little worried that he’s regress to the point he won’t agree to go get the shot.

2 Likes
29

I’ve posted this before, but I used everything and will again use anything I can to get my son to stay on meds. I told him he’d lose his disability because they won’t pay it if he doesn’t stay med compliant and they’ll check (he still thinks or is hoping to move out soon…so he doesn’t want to lose that.) I told him he couldn’t live here if he’s not on medication. I can’t live that way. Those things are enough to get him to stay on meds. I was also going to use, I’m going to pay you $50 or $100, or whatever, for every shot so you can have a little extra $$ and I know you don’t like to get those shots so that’s an incentive for you. Didn’t have to use that one though. (That was a last resort when he was really, really ill.) He’s also getting a little disability money (not much) so this $$ incentive may not work anymore, but I’ll say anything if I need to. When he got well enough, and still is, I’ve told him that psychosis can permanently damage your brain and some people never come back from it. I think these things scare him so he’s med compliant now. He won’t be though if he slips back into psychosis, so I’m living day to day around here. Also, my son loves to eat out, so I tell him after you get your shot we’ll go to Denny’s (or any restaurant that’s around). He’s always happy about that. I usually tell him that a day or two ahead so he can start looking forward to it (always works). Maybe a video store or even the Goodwill or anywhere he may like to go, you could say we’ll stop there after your shot and see what they have. My son likes to buy movies at the Goodwill, likes Best Buy, video stores, Walmart, food. Tried the library but he’s not into reading right now. Just a few ideas.

4 Likes
30

Those are all good ideas.
His case manager has already said he won’t get approved for disability without being in treatment. Some people say that’s not true, but I’ve read somewhere on the SSA site that they want you to be trying to get better.

He is too socially anxious to eat out, but they have a hot pot dish at the Chinese place we get takeout from that he loves - it has mussels, scallops, shrimp & octopus in a spicy Thai broth. It was his pick for Christmas dinner, but I could always try to use it if I need to.

He did say he would go get the shot when we talked about it a few days ago, so I’m hoping he follows through.

He’s funny about rewards though. In elementary school, his teacher recommended that we set up a reward system, so I asked him what kind of things he’d like as a reward. He said nothing - that’s how you train dogs. I let it go at the time, but it might work better now.

1 Like
31

I didn’t know that about the disability. I made it up at the time but now I’ll have to check into it and see how much truth it holds out here. Either way, he won’t check it out so I can use it. Thanks for passing that along.

Your son’s answer to a reward system made me laugh. He’s so right. Cute answer. Sounds like he was too smart for that system! :wink:

It sounds like he’s willing to go! Great to hear! (My son gets his shot Thursday.) Good luck!

32

Everyone seems to use it, so I’m going to roll with it, but I really do think I read it on the SSA site.
Next time I see it, I’ll post the link.
It didn’t sound like a hard & fast rule, but they did make it sound like it was a very strong suggestion.

1 Like
33

I’ve talked with my daughter’s doctor about the shots and so far she has seen her doctors twice in 2.5 weeks and seeing her therapist once a week. Already I see a huge difference. However she is still very secretive about what kind of medication she’s taking but I suspect she is receiving shots. In the last 3 days she’s slowly coming back to reality.

Today she joked and laughed with me at my silly jokes. It’s so encouraging to see her smile. She’s still withdrawn but no longer aggressive and mean. If it is the shots I’m so grateful for this forum mentioning it. She still taking some of her pills but my daughter did tell me her doctor reduced one of the pills. Keeping my fingers crossed,

3 Likes
34

Slw, Our sons PDoc suggested going in a week earlier and they did fill the script. I was reading last night in Surviving Scizophrenia that court ordered medication is effective in preventing hospitalizations. The statistics seem to support it and I think I’m headed in that direction with my son on the shots. I hate the battle but I don’t think I have much choice.

35

I have the shot here - the appt to have the nurse give it to him is next friday, and that’s 3 days earlier than Day 36, but still 28 days after his 2nd shot in the hospital.

36

Hopefully he’ll go through with it. I wish you the best.

1 Like
37

That’s great your daughter is finally doing so well. I know you’ve been very worried about her.

I need to get my son back into some kind of therapy.

The moved him from the substance abuse unit where he was having regular therapy but it was doing more harm than good to a case manager.
She bent over backwards for him to get on the shot, and I’m grateful for that.

But, I’m a little frustrated that they saw him the day after he got out the hospital (3 weeks ago), he has no therapy, and he won’t see the pdoc again until January 31st. He will see the nurse to get his shot this coming Friday, but that’s it.

They want him in the intensive program where he will see doctors/therapists more regularly, but he has to be on Medicaid, which means he has to get on disability. I get that they don’t want to keep switching him around, but in the meantime, that’s a long time to go without more regular treatment - especially when we have insurance that will pay.

I’m talking to him about going back to one of his old therapists or at last going to this really good group program they have here that’s peer run.

38

Slw - your are such a good advocate and with a mother like you - you will find a way to help your son. This road we’re all on is a very difficult one and not too many outside people can understand or appreciate the level of our commitments to our children. There are times I want to give up and tell myself - screw it I’ve done enough and I think we all have days like that.

I think sometimes our kids have to walk through a lot of hardships, suffering and darkness and then one day with the support of their families do get help.

2 Likes
39

I don’t mind advocating - I just wish he wanted me to advocate, or even realized he needs me to sometimes.

On his good days, he’ll tell me that I do too much for him so I’ve made him incompetent.
On his bad days, he doesn’t need any help from anyone - me, doctors, therepists, no one.

1 Like
40

I’m the one who mentioned taking pills for 3 months only because at Kaiser hospital a psychiatric nurse mentioned it to me.

1 Like