Invega Sustenna Questions


#81

I would go ahead and get him another dose as soon as possible. I have heard of people getting the shot every 3 weeks. The maximum dose is 234 in one shot, so if your son is at 117 that doesn’t seem like it would be a problem. It sounds like the dose isn’t quite high enough yet, but then I’m not a doc. My son was on 156 for about 9 months. When I went in with my son to the nurse last shot, he went from 156 to 117. She said they don’t have any other patients on the 117. Most people at the clinic are at 156 or 234. I thought that was odd since 117 is the maintenance dose. It’s possible that Invega Sustenna may not be the right injection for him. I hope this next boost does it and the delusions go away. If not, you might think about switching medication or adding some oral med to it, just to get him to where he’s okay again. Sorry this has been such a struggle for you. I want to say I love my son taking the Invega Sustenna and it works great. Which it does, for my son. But I know everyone has meds that work better and worse for them. Has your son ever been on Zyprexa or Abilify? I think they too both have injections available. My son has to stay on an injection - if he slips or loses any progress he will refuse meds again.


#82

My son refuses everything but the injection too.

He was on oral Zyprexa for a long time, but it doesn’t work for him anymore. The injection for that is scary too. Some people have died because the time released meds can sometimes work as instant meds and overdose people. So, now the FDA says if you get that one, you have to sit in the doctors office under observation for 3 hours with each shot to make sure you don’t have a bad reaction. He’d never agree to get a 2nd one if they did that to him. Plus, the place he goes says that shot is too risky - they won’t prescribe it.

I’m hoping an increase is all he needs because he did so well after the first 2 starter injections. There’s a possibility he will because he has a history of doing well, then needing a dosage increase on almost everything he’s ever taken. In the middle of all this, he switched over to a new psychiatrist (adult instead of pediatric) so they haven’t seen that. They have the old pdoc’s notes, but they’re all handwritten and barely legible.

Edit: He admitted he didn’t sleep at all last night. I think that’s 3 nights in a row of little to no sleep. He’ll be really, really sick by the time we go in on Tuesday if this continues.


#83

My son would already be full on psychotic if he had no sleep for three days. Be careful and hope you get some answers soon.


#84

Day 3 is usually the start for him.

Since he went into the hospital the first time, he relaxes in the bath as what I think is a coping mechanism. He says it calms his anxiety. In any event, he is very clean.

He’s pretty much staying in the tub half the time right now, but I know he didn’t stay in there all night because it looks like he smoked a lot (full ashtrays) and either tried to sleep or just watched TV on the couch - the throw is down over the couch. He has the TV turned up high enough that he can hear it in the bathroom, and now & then I can hear him laugh to himself.

I’m balancing making sure they see how sick he is with keeping him together long enough to make the appt. I’ll get some more meds in him this afternoon & hope that he winds down & gets a few hours sleep.

He does not look or act tired at all, but I don’t want to put too much pressure on him to sleep & get him all anxious about it - that just makes it worse.

Last time he went in the hospital, he told them he hadn’t slept in 5 days. I suspect it was longer.
The longest I’ve seen him stay awake was 10 days straight.
48 hours is common for him, but once it goes past 3 days, we’re start to enter dangerous territory.

I used to either stay up with him or I’d sleep on the couch while he tried to sleep on camp pads on the floor, or vice versa, but I can’t do that anymore.


#85

I just did the math.

This month, the Invega Sustenna shot was moderately effective, but he had a big increase in symptoms starting this past Wednesday, 9 days before he was due for the next 28-day shot.

If it takes another 5 days for the shot to be fully effective, that’s 14 days (9+5).

So, he’s getting 14 days of effectiveness out of a 28-day shot.

I’ve read that increasing the dosage can help reduce symptoms, but it won’t necessarily reduce or eliminate the problem people are having on the last week.

When he came out of the hospital after the 256 mg induction & 150 mg booster, it took about another week, and he was great after that - for 2 weeks.

I’m wondering if they can give it to him every 3 weeks, if it will build up enough so that he’s not having symptoms come back, because I can’t possibly see how his brain will every have a chance to heal if he’s psychotic for a week every month.

Any thoughts on whether an increase in dosage & frequency might work? I’m trying to get my thoughts together before we go to the doctor.


#86

Either every 3 weeks, or every 4 weeks in combination with another antipsychotic to relieve the symptoms and make sure it’s working.


#87

I am under the impression that the shots can be given at more frequent intervals, but there is a limit.

Lots of people supplement depot with oral meds. If I remember correctly, your son is not interested in that.

I think it would be good to let the doctor know your goals in concrete terms: sleeping at night, whatever else regarding symptoms and behaviors, then ask the doctor what dose and frequency might help meet these goals.


#88

I hadn’t heard that about the Zyprexa. Thanks for the info. Pretty scary.

Well, it sounds like if his pattern is needing a dosage increase, then hopefully that will do it.

I can’t believe it’s been 3 nights since he’s slept. That’s a really long time. Hope he sleeps a bit tonight. Poor guy.


#89

Yep - the Zyprexa injection is so scary that the clinic where he has outpatient treatment told the hospital not to prescribe it when they started down that path because they would not administer it or renew the prescription for him. They think it’s way too risky.

He’s settled down in the living room to try to sleep on the couch with the lights and TV off, and I’m upstairs in my room hoping the house stays quiet all night. We have two huge dogs that sleep in the kitchen, but they won’t make any noise as long as they don’t hear anyone stirring near the house, which never happens.

I’m thinking I can see the meds work a little bit for him. Luckily, he responds fast when he responds. He wanted a big hug before he laid down on the couch. He’s taken 3 or 4 baths today - says soaking calms him down - but he’s apparently not using any soap. My husband goes through body wash like it was going out of style, so I got him the bag out & let him pick out a new bottle, so hopefully, he’ll lather up tomorrow.

Two nights of no sleep is a frequent thing for him. Three nights happens now & then & it gets a little dicey. Usually, if it goes to 4, he falls off the edge into what he used to call the Twilight Zone, and I lose him.

I wasn’t kidding when I told his case manager yesterday that if I don’t get something in him he could be sick enough that he’d need the hospital by Tuesday when his appt is scheduled, not that I’d try to force admission if he didn’t want to go under the circumstances.


#90

Sounds like he might sleep tonight and the drugs are working fast. They do tend to make most sleepy. I can’t imagine staying up that many nights.

It’s nice he’s found that baths sooth him or keep him calm. Sounds like he’s really struggling though. Hope Tuesday they switch things up. He sounds like someone that can get well with the right type/amount of meds. That’s a great thing and very hopeful.


#91

Hi everyone, just wanted to let you know I have been on 78mg of invega sustenna since September of 2015 and I have no positive symptoms


#92

I also wanted to let you know that I go the full 28 days without getting the injection again


#93

Considering that I had a pretty severe case of schizophrenia I think that this is good news. I would also be concerned that your insurance may have a problem with paying for it every three weeks instead of every four weeks.


#94

Thank you for sharing that. That’s great to hear! If you don’t mind me asking, how are your negative symptoms and have they improved at all over the last few years?


#95

Very good point. I didn’t think of that one.


#96

My negative symptoms are not as bad as they used to be but I still have them. My motivation is sometimes good but their are days I still don’t do a whole lot. I still experience emotional flatness. I also started sarcosine which seem to improve my mood and helps to make me more alert. The anhedonia I still have but is not as bad as it used to be. I didn’t work the first five years after my diagnoses. But I now work part time. I still can’t see myself going back to work full-time. It would still be too difficult for me. I am sorry to hear that people have to take such high doses of this stuff and that it seems to wear off early. I have never had that problem. The only reason I mention the insurance issue is because I was looking at med d plans and some of them only wanted to pay for invega sustenna every 28 days. I would imagine other insurances may do the same thing. However their may be some way to override something like that if the medication starts to wear off early.


#97

Hi Jassy22,

I’m glad that it works for you like that, but everyone is different, and I can’t accept that he has to be well for sick for a week or two a month.

As for my insurance, I work for one of the biggest companies in the world as a senior systems developer - on their website of all things. The plan is administered through a private insurance company, but they self-pay - so they can do anything they want for me - if they want to do it.

So, unless they want me to miss a ton of work and be distracted, I think they’ll jump on it. And, if the doctor recommends it more often as medically necessary and they don’t, I have no problem pushing the issue through a lawyer and the courts.

I have to tone things down around my son, but I’m at the point that I will do whatever I have to do to make sure he gets the treatment he needs. I’ve now seen how could he can do when the meds are working well, and I’m not going to accept anything less - period.

In other words, I’m prepared to fight for him to be doing as well as you are.

And, maybe once they have the right dosage and he’s stable, he’ll be able to go 28 days too, but the evidence is showing that he can’t do that right now.


#98

It looks like he slept, but one of the first things he said to me this morning was a dead serious - “I’m Jesus Christ”.
We are not religious, and when he’s well, he’s very skeptical & often says he’s an atheist.

I’ll add that we’re not anti-religious - it’s just not something that’s part of our day-to-day life at all. I don’t tell people I’ll pray for them, I don’t go around saying Thank God, it’s just not there, although I’m very happy if someone finds true faith and it gives them some joy or peace in their life.

I told him just as straightfaced and dead serious that he was not Jesus Christ.
He said OK, then I’m -------------- ----------------, which is close to his own name, but he switched one letter to make his middle name a color. Then said Kurt Cobain told him that when he was at Johnny Carson’s house.

Next, he says that he saw into the future as a baby & saw his e-cig (he’s got a high-tech mod) and later called it his Holy Vape or something to that effect.

Then we had breakfast.

How was your morning?

Other than that, he has Pandora blasting on our surround sound (luckily I like most of his music choices good enough - as long as he’s not in a rap mood), pacing like crazy and smoking like a fiend.)

To be honest, I feel like he needs induction levels of Invega again, but I don’t expect him to get that. I don’t expect them to do anything but give him the shot & say they’ll give him another one in three weeks. I hope I’m wrong - I’d even be happy if they renewed his oral Invega & I’ll get it in him one way or another.


#99

I would the same and I’m trying to make it happen. Unfortunately the psychiatrist I saw on Friday was a complete jerk.


#100

It’s amazing how sick they can get & how fast it can happen.

Last weekend, I thought I was just going to have to play the waiting game for those 6 to 12 month results people are seeing on Invega Sustenna.

Today, still 2 days out from when he scheduled for the shot, and 5 days out from when he should actually get it, he is just as delusional as when he went in the hospital, and he has had 2 behavioral things that I won’t discuss publicly, but I’m sure you can imagine - things you’d normally only do in private. Totally out of character, and I don’t think purposeful, but just shows his mind isn’t clicking. If he was well, he’d be soooo embarrassed, so other than his doctor, I’ll never tell anyone.

Thankfully, there’s no anger or paranoia, but I still feel like we’re back to square 1 - and who knows what will happen in the next 36/40 hours until his appt - then another 5 days for it to kick in.

I wrote a long, very detailed letter with a bullet-pointed timeline I’m going to drop off for the doctor tomorrow. Hopefully, she reads it before she sees him/us.