Invega Sustenna Questions


#41

I’ve got some, so I’m planning to get them in him the best way I can.
I’m glad you guys explained it all, because they didn’t at the hospital - his case manager did briefly.


#42

Thanks for the info.


#43

Do you mind me asking what maintenance dose of Invega Sustenna your son is on? My son is going from 156 to 117 this week because of side effects that seem too strong. We’re going to try the 117 but I’m pretty nervous about it. I think mostly I’ve read that this shouldn’t be a problem but everyone is different. Just curious, if you don’t mind. Thanks.


#44

Just read this post. My son gets his Invega Sustenna every 4 weeks. So Thursday he’ll get one and then 4 weeks on a Thursday he’ll get another. I have to make sure when they make the appointment - the receptionist messes it up! Last time she had him scheduled for 5 weeks. ~~ rolling eyes ~~


#45

I know what you mean. My daughter has told me the same thing but today she’s being nice to me.


#46

I have a question about the costs and coverage for the Invega injection. My son has been taking this injection for the last year, and we pay out of pocket for this. Insurance (Humana) will not cover it. My son now has Cigna because we moved to a different state. He was just recently approved for Medicaid. I think Medicaid might cover the injection… but not sure. The office he goes to for the inection which is Compass Health does not take Medicaid.

Wondering what you all have for coverage of this very expensive injection??? Thank you


#47

My son goes to a clinic that does take Medicaid and they pay 100% of the injection and the doctor visits and the caseworker. I can’t say I’m crazy about the clinic but we really can’t afford to pay for it so we’re a bit stuck. I’m always looking for another place that takes Medicaid but it’s hard to find, so for now we’ve decided to stay with it. Good luck!


#48

We have Caremark for our prescription coverage & have a $300 copayment for the Invega injection.

However, I did find an Invega Sustenna assistance coupon that brought that down to $10 for us. I was only able to use it once so far & it expired on 12/31/2016, so I’m hoping that the offer will renew for 2017 since they also had the program in 2015.

They had multiple levels of help based on whether you had private insurance, Medicaid or no insurance, but I only know the details about the private insurance.

Here’s the link in case you can use it.
http://www.janssenprescriptionassistance.com/invega-sustenna-cost-assistance

It looks like if you have no insurance & need help paying, there’s an application process.


#49

Thank you, I will look into it!!!


#50

I know this has been posted on other threads, but Invega has been talked about so much on here I couldn’t find it with a search.

How many days after a shot before the Invega Sustenna is bio-available?

My son did so well when he first came home from the hospital after the initial 2 shots plus Invega pills.
I’ve only been able to get the pills in him here or there, and started having some breakthrough symtoms about 10 days ago (here & there, nothing terrible, but noticable) and got his first monthly shot last Friday.

He’s spending more time to himself where before he would come into the living room & talk or watch TV, sometimes play cards or a game.

He’s still way better than he’s been in months, so I’m happy, but want more for him.

And, for anyone who’s went up from the standard 117 mg/month, how long did they wait before they decided? My son has a new psychiatrist. I like her because she asked lots of questions and talked to him about all kinds of things, but she also seems very conservative. I certainly don’t want to overmedicate him, but I do want him to have enough to get the best results too.

I also know most of you said the Invega is slow, steady improvement that goes on for months. Am I being too impatient?


#51

Today made 5 days after the shot & it must have kicked in today.

He was much better and even said he thought he’d try the Trintellix after all & see if it helped. We had a good conversation about what the local psycho-social clubhouse could do for him to help him be more independent.

I had to take a call for work and he asked some insightful questions about what I do. He knows what I do in general, but these were more specific questions.

And, he took out the trash! I’ve never even asked him to do that.

I spoke to his case manager today and she said they’d probably give it about 6 months before they would go up on the dosage unless he started to get much worse - that it would take that long to be fully effective. But, she did move his next injection appt 3 days earlier so he can get it on the same trip in to see the psychiatrist, so if it’s giving out a little early that will help.

Things are still far from perfect, but so much better than before the shot. Still no side effects besides increased appetite, and he hasn’t complained about that yet. At least this time, he’s equally happy with healthy foods as junk, so I think we’ll be able to keep things somewhat controlled.

Today was a good day, and I’m very thankful.


#52

What great news for you and your son! I noticed the injection took a while too and my son s still improving in small ways. Who knows, maybe when they’re a year or so into it, it will be even better! A psychiatrist told me that those who do go back to work, it usually takes a year or two. That tells me it takes a while for the meds. My son probably won’t work because he had such terrible social anxiety even before all this. Nothing makes him more uncomfortable than talking to people he doesn’t know. But again, who knows. I had two parents tell me at a NAMI meeting that their child is in their 30s now and they are much much better than when they were early/mid 20s. So we can be very hopeful. I think that’s why I love the shot. If he slips and starts going backwards, I know it’s not from not taking the meds. Thanks for sharing. Happy for you both!


#53

My son has never worked before - he has really bad social anxiety too. It’s the first thing we noticed, well before he had any psychosis. He was shy even as a toddler, but in third grade, I remember going into school for something and it just happened to be lunchtime. He didn’t see me, but I was watching him. It was like he was trying to shrink into himself he looked so uncomfortable.

I’ve been talking to him about the Trintillex because he was taking it for about a week when he was discharged from the hospital, but he wouldn’t take it once he came home. At that time, he did seem a little more comfortable going out in public. Lexapro had worked for him for about 6 months one time - he could go into a store and talk to people if someone asked him a question.

I remember once he helped an older lady find the video games in Costco, and that was a major achievement for him. It was also the first year since elementary school he had a teacher he actually liked. Poor guy - he apparently was having a hard time too. He was a drama teacher, but was teaching English and my son wrote him a little note, just a sentence or two, at the end of the year about how he had liked his class and the teacher practically cried over it.

I’ve only mentioned the Trintillex in passing because medication is the one thing we fight about even when he’s well because he sees it as me trying to control him. So, it was a really big thing that he said he was going to give it a try. And it’s important - he still doesn’t have a SZ diagnosis, although I think that’s coming. His regular caseworker and two different therapists think that’s what he has - the hospital caseworker says she doesn’t see it because he doesn’t have the persistent negative symptoms and it’s more in line with major depression with psychotic features.

If it was me, I’d come up with a new category - major anxiety with psychotic features. Everything else comes & goes, but he’s in a near-constant state of anxiety, both general and social.


#54

Your son and mine sound like twins. My son has always been like that too at school. The shrinking into himself comment describes my son to a T. And when you see those little glimpses of interaction, like the Costco and teacher, it melts our hearts. I don’t think it can be explained to people how hard life is for them sometimes.

Glad to hear about the Trintillex and Lexapro. I was hoping we could eventually find something that would help him with doing something with his time and social anxiety. It’s hard because there’s always a chance with a new drug things could get worse.

I wonder what the negative symptoms are that the caseworker is talking about. Do you know? Seems like social anxiety and no motivation are pretty big negative symptoms.

Thanks for sharing!


#55

It’s amazing to me how much our kids have in common here, even if some of them have different diagnoses.

As far as negative symptoms go, my son doesn’t usually have the flat effect and he shows lots of emotion. Sometimes, too much - it’s like he’s a raw nerve sometimes. And, he can read people like a book. He might think he hears people say things they don’t when he’s sick, and he might misinterpret what they say when he’s well from time to time, but he’s a master of interpreting body language, tone of voice and facial expressions.

He does go through the periods of not taking showers/changing clothes when he’s very depressed, but when she saw him he was in a stage where he’d take two baths a day & soak in the tub for hours - and, he had taken to buzzing his hair so short he was practically bald, so that gave him a cleaner look.

He had also been working on maintaining eye contact, so that was probably pretty good.

I’ve never really thought of social anxiety as a negative symptom. The isolating part would be, but the severe anxiety he has in public falls into the positive category in my mind.

And, I guess she might have put any lack of motivation into the depressive category if they were thinking major depression with psychosis.

The cognitive parts would be hard to categorize. I know that’s a negative symptom, but he has a learning disability too that involves long-term, short-term and processing memory. That was diagnosed when he was 6/7, but I know he was born with those issues based on how he learned things from an infant on up. Some of that has gotten better, and some has stayed the same.

When he was in the hospital, he was very paranoid & delusional, and she did say that after a week on the Invega, it was like night and day for him, and it was. He’s still a work in progress, but much better than he was before.


#56

Interesting how much they’re alike, you’re right.

Thanks for sharing so much. It’s helpful to hear what other people are going through, both parents and kids. I can relate to a lot of it.

Good point on the social anxiety. I didn’t even think about it being a positive symptom, as they use the word “social” in a lot of their negative symptoms of sz, but I think you’re right.

I hope your son is still doing well. Again, thanks for all you share.


#57

My son is scheduled for his 2nd monthly Invega shot next Tuesday - that’s slightly earlier than the 28 days.
(He had his first 2 starter shots in the hospital, then his 1st monthly last month)

However, he’s mentioning some of his delusions more often. He’s not agitated about them, just mentioning them. And he’s also laughing to himself more often.

He did this for a little bit before his first shot, I got some of the Invega pills in him for a few days to augment the shot & it went away. This time, the pills don’t seem to be helping.

You guys have told me you saw slow improvement over 6 months or so & that’s what his case manager explained to me too. And, that the delusions are often the last thing to go. But, I’m starting to get a little worried.

Am I being too impatient?

He’s pleasant enough to be around right now. He’s not paranoid or aggressive or anything. He’s just happily pondering his delusions a lot of the time and he doesn’t have any interest in going out much. I’m just worried that I’m seeing the beginning of a downhill slide.


#58

Hi there. I wish I knew what to tell you. My son, as we’ve talked, has been on the Invega Sustenna shot since May. When he first got on it, the doc also had him on Zyprexa once a day as well (don’t remember the dose). He did very well, but he was on two meds, Invega Sustenna (shot) and Zyprexa (pills). We eventually switched the pills from Zyprexa (it was making him too sleepy) to 10 mg of Abilify once a day. He’s less tired and his mood is improved. He’s still taking the Abilify today. I think it doesn’t hurt to have him on two things at once, for my son that is, at least for the time being. If your son is taking a pill of Invega maybe you could have it switched and try some other oral med with the shot. It’s such a trial and error. He’s still pretty new to the shot but I don’t think it’s unreasonable to ask the doc to try something else oral, if he’s willing to take them.

Also, not sure what dose of Invega Sustenna injections your son is taking, but the dosages range from as low as 39 up to 234 mg. Maybe the doc could increase the dose of that for a few months to see if he improves faster. You may have to contact the doc soon if you decide to increase for his Tuesday injection because it takes our pharmacy several days to get the new dose in. They don’t just have it handy at all pharmacies. Good luck.


#59

He’s going to get his injection just before his next pdoc appt, and they have him on the standard 117 mg injection. They’ve already told me they may want to give it 6 months, but I’m going to keep talking to them about it. They really seem to want to help him, but they have also been very clear that they don’t want to over-medicate him and cause him to refuse meds again. I get their point, as long as we’re headed even the tiniest bit forward or even just maintaining ground. Backsliding, I’m not so on-board with.

As far as oral goes, he is willing, right now, to take an anti-depressant and vitamins, but he won’t take anything else orally if he knows that’s what he’s taking. The whole reason he’s on the injection is because he lost insight & decided that AP’s were bad for him, and since there was nothing wrong with him, he wasn’t going to take them.

Right now, he doesn’t have true insight. We’re trying to get him on disability to get him into a more intensive program here that’s only available to Medicaid patients. He asked me what was put on the form, and when I told him mostly psychosis, he was OK with that. He will admit he’s had past problems, but is convinced his delusions are 100% real at the moment.

Maybe the Trintillex will help since he just agreed to take it, but keeps forgetting. Now, he seems agreeable to me reminding him, so I’m going with that. The case worker & his two most recent therapists see schizophrenia or schizoaffective, but the hospital case worker and psychiatrist plus his former psychiatrist see major depression with psychotic features. He was much better when he came out of the hospital on both the Trintillex & Invega, so it’s hard to say.

He had taken Zyprexa for years & it finally gave out on him. A few other AP’s seemed to do nothing for him at all, so I’m hoping the right dosage of Invega will be his miracle drug.


#60

Slw, I think give it more time and ask his doctor about the supplemental pills.