I had a similar story with my son. Almost 2 years back he had been started on risperdal consta biweekly shot. 37.5mg. There were set backs every couple of days or every week. They did not change anything for 10 months and moved him to a crisis residential. After a couple months crisis residential increased the dosage to 75mg/biweekly. Next almost 4 months. Same story. Hospitalized again. Put on monthly shot of invega sustenna 117mg. After Couple more months dosage increased to 156mg. A couple more months dosage increased to 234mg plus mood stabilizer started plus heavy dosage of zyplrexa started. This happened in June. Now since feb I do see some stability. Touch wood!! No delusional talk. No paranoia seems to be present. Touch wood again!!
That’s great - I’m sorry it took so long though.
They just started my son in our county’s Intensive Community Treatment program. It’s designed specifically to help people with severe mental illness, even if they lack insight, to stay out of the hospital and to help them develop the skills they need to be as independent as they can - or want to be.
He meets with the psychiatrist on that team next Monday. I’ve been told that since she is dedicated to this team and only works with this type of patient that she’s much more aggressive.
Right now, I’m just holding onto the fact that the very, very high initial dosages worked wonders for him. It was literally like day and night within about 5 days.
He went to see the psychiatrist he’s been seeing for the last few months today.
She wouldn’t give him his shot early, even after I told her he’d stopped sleeping (about 6 hours of sleep in 72 hours or probably more by now), but talked him into taking his oral Invega until he gets the shot on Monday.
I don’t think she would even have done that if I hadn’t interrupted her to say he would be back in the hospital before Monday if he something didn’t change. She said to give him 6 mg, but I’m going back up to 12 like the hospital prescribed when he left. I should never have stopped it on her recommendation. Actually, I wouldn’t have, but someone asked the doctor who will be his new one as of this coming Monday & she agreed.
She also told him to let me take him to the hospital if things got worse - that is not happening. I am not taking him back there only to get the same meds I can give him at home and still give him a shot around next Monday. Well, if he asks to go, I’ll respect his wishes, but I’m not going to seek it out.
His caseworker was kind of surprised that she didn’t give him the shot too, and said while she wasn’t a doctor and couldn’t tell me what to do, I should just make sure I tell the new doctor he’ll see on Monday what he’s been taking. This new one is on the intensive team and specializes in SZ - she’s supposed to be much more aggressive with treatment.
However, if Invega Sustenna continues to cut out on him before the 3-week mark, I don’t know that this will be a sustainable treatment option for him.
I’m OK now, but I came out of that office more than a little mad. It definitely felt like a wasted trip.
The only positive was that he did take his pills when he got home, he got to ask his current case worker to come to his appointment on Monday, and the new case worker from the intensive team got to see how he is when he’s really ill. So, maybe not wasted after all.
@slw, I wanted to let you know I hope you and your son find success and answers with the intensive treatment team on Monday. Keep us posted on how he does.
Thank you - I’ll definitely let you know.
I’ve been getting the Invega in him orally this weekend, and he’s a little better than he was - at least getting some sleep. But, he was practically begging me to take him to the hospital this morning to get his shot, but I knew they’d keep him, so I told him I could call crisis and see if they could get me authorization for a doctor to give it to him at one of the emergency rooms.
He took his Invega pill willingly and said he’d try to hang in there until Monday - then wanted a Zyprexa (it had been good for years, but wasn’t working lately) so I figured it couldn’t hurt him. It almost instantly calmed him, so I don’t know now. I’m going to mention it to the doctor.
We had a pretty good day after that. He agreed to go out if he could stop by the store & get a beer, so I agreed since I’m just trying to get him through the weekend. Then we grabbed a takeout pizza, got gas and walked maybe a mile on a park trail before he got too paranoid about people being in the woods and we had to leave. Even before we started walking he said someone was going to jump out & kill him. Then, we went to the greenhouse & picked out a few plants and came home. There were two elderly ladies in there with three elderly dogs. For some reason the dogs bothered him and one bothered him on the trail we went on (all leashed) - I don’t get that because we have 16 dogs including the hunting dogs.
He said no, then yes, to another 6 mg of Invega tonight and now he’s looking like he’s settling in to go to sleep on the sofa.
Today, he talked about some of the things he’s afraid of.
He’s afraid of people - that’s a constant that doesn’t change.
And, he’s afraid he’s an abomination and not a person at all. That’s heartbreaking to hear.
He’s afraid that I’ll die and he won’t be able to live without me. I explained the Intensive Treatment thing is supposed to help him learn some independent living skills, but I’m not planning to die anytime soon, and if I die at the age my parents did (grandparents near 90, biological parents I never see are well into their 60s and going strong), he’ll be an old man too.
He was also afraid that all our trees are dying around the house, but no where else - so we had to go out and do a 10 minute drive so he could see that none of the trees have their leaves yet. And, for some reason, he just asked if we are in a drought.
He’s afraid that no one would want to buy our house (he wants to move to a new one) because it’s not in spotless shape (no one in the house is careful with stuff & we have 2 dogs, 2 cats and a rat - I’m well over spotless), so I explained that you usually do all that when you get ready to put your house on the market.
It seems the list is endless.
He says he’s a natural worrier, and I tried to explain that he worries about things that most people would never even think about, and that we need to get him help for that whether it’s meds or therapy or something else, and he seemed kind of OK with it.
We’re finishing up day 4 of adding the oral Invega back, so it must be starting to work. Even with all the fears, he was better than yesterday - and he’s sleeping.
I guess all the grandiose delusions were his protection from all these fears. In those thoughts, he’s all powerful and all knowing.
That’s an interesting way of understanding grandiose delusions. Thank you.
We just got back from the doctors.
He tried to play music on his cell phone really loud through the whole appointment, he pushed back a lot, but got his shot and she said to continue the 6 mg oral Invega until we see her again. That will be a battle, but it’s better than saying just go with the shot only.
When he went to get his shot, she asked more about his past history with prescriptions & it sounded like she had some ideas for change. She said she didn’t want to change anything much today because then he might get paranoid about her. So, I’m guessing she’ll build some trust first, hopefully get him more stable than he is now, and then we’ll see.
He’s very agitated today & wants to go by our old house - he got sick for the first time right before we moved there. I told him it was OK to drive by & look but other people lived there now & he couldn’t get out. He said sure he could to Trick or Treat - then got mad when I said it wasn’t Halloween.
So, another day starts …
My son once again refused the oral meds 1 day after he said he would take them, but I’ve been ensuring that he takes the 6 mg/day dosage.
So, the last shot (156 mg from the hospital) seemed to give out on him early, around Feb 25.
From March 1 - 6, I gave him 12 mg oral/day.
He got his current shot (156 mg) on March 6, plus the 6 mg oral.
He started sleeping better just before he got his shot, and he started to get easier to live with within a day or two afterwards. However, I just noticed a drop in his delusions yesterday after he declared he was no longer able to see into the future. There’s still some talk, but not nearly as much.
He sees the dr again next Thursday. That will be 18 days after his last shot - and it gives out on him suddenly between day 19 & 21. From the last appt, she indicated he only needed to take the extra pills for 2 weeks, but I’m going to keep giving them to him until we see her again.
My opinion is that we need to either:
- continue as we are for awhile
- go up to a 234 mg shot plus 3 mg oral a day
My thoughts are if he’s starting to stabilize, don’t rock the boat - there will be plenty of time to see what they can decrease after he’s had a few good months behind him.
Their goal is to have him on the shot only because he’s not med compliant on pills - and they want to give him the least amount of drugs possible.
Because he doesn’t exactly know he’s taking the Invega pills, I’m going to write a status update along with my thoughts on what to take moving forward and drop it off a day or two before his appt.
Any thoughts or advice?
I think going up to 234 mg dose is a great idea. According to the nurse in our clinic, most everyone is on the 156 or 234. I thought that was a bit strange since the 117 (online) is the maintenance does. But maybe that’s after a year or two of stability. It’s possible that going up to the 234 he wouldn’t need the oral. Good luck. It sure is a trial and error, isn’t it?
I’d love it if he didn’t need the oral, but I’m nervous about finding out.
The 117 mg didn’t do much at all for him. The 156 was a little better, but still not what he needed, so hopefully the 234 will be it.
However, I worry that even before the 3 week mark, this stuff cuts out on him like someone flipped a switch.
He just stops sleeping completely & a few days of that means he loses all his forward progress.
It’s possible it’s not the best drug for him. I’m sure you’ve been through many others. I hope the 234 is a good dose for your son. My son just went down from 156 to 117 and he’s doing fine as far as psychosis but he’s still having really bad side effects. He was also on Abilify 10 mg and they stopped him on that to see if that is what was causing it. I’m really nervous they’re going to switch the meds altogether, which they may have to, but I’m anxious about it. He has to stay on an injection because he was one that wouldn’t take meds, and could easily go back there. I’ll have to research the other injections. Has your son been on any others?
JulieAnn what side effects does your son have? my son is on the 150mg paliperidone depot every month , no orals.
Hope the 234mg does does the trick.
He has not been on any of the others, and Zyprexa would be out because of the time needed for observation afterwards. We all agree it’s too dangerous.
My son doesn’t really have any side effects on the Invega other than he has a very, very healthy appetite - and I think he’d have that on any anti-psychotic that works for him.
He’s sleeping well, the paranoia is gone, the agitation & anger are down, and we have had it take away the delusions at the higher dosage they use at first. I’m not ready to give up on it yet.
I switch between really thinking the med is working and other times feel its not good enough.
My sons appetite has always been good but yes its more now on the AP.
He walks around his room, any room a LOT too but he isnt bothered and seems happy doing this, despite me telling him he will wear out my carpets!
His delusion is mentioned less and less too which is good. His anger has gone and he is so lovable, its so nice not to have shouting and arguing at home and have a calmer life right now for us all.
That’s been my son’s experience too.
His sense of humor is back - he jokes around a lot, he laughs and smiles. He still has some anxiety & he paces a little, but if I compare it to where he started, he’s miles ahead.
I just can’t help wanting more.
Sounds so similar to us slw, sometimes I want more then days I grab all I can and savour the time I spend with him being happy unlike a year ago,
Jane, my son was on 156 and now is on 117 of Invega Sustenna. Is the paliperidone the same? The dosages don’t match up with what my son gets so I’m perplexed. Anyway, he has moments when he just blanks out. If I’m watching him it’s just a blank moment and his coloring changes to pale, then back to normal and he’s fine again. He says things go white. He’s never fallen down. But he also is constantly taking deep breaths, kind of odd. I think it’s probably the Invega but I sure hate to switch. He also paces constantly, nonstop, but it doesn’t bother him. Maybe it helps keep the weight down from the huge appetite - who knows - trying to look at the bright side. I don’t care about the pacing, just wish the blanking out would go away. Maybe that’s what they consider to be lightheaded, which is a side effect. He’s taking a side effect med for it but it’s not doing anything for him.
I’ve just looked on line it says along the lines of the 156 dose hydrolises to the amount of 150 of active paliperidone. So it’s the same dose I guess maybe just analysing the content further. ?
It does sound worrying when your son does that. Maybe it’s slight lightheaded feeling. With you saying he goes pale it sounds like that I must admit. Is he prone to this anyway ? I mean before , me for instance could be prone at time to slight dizzy spells only last seconds and pass, ok not often but is he quite sensitive to stuff? Could it be connected to blood pressure, sugar levels perhaps.
I think the drug is good, not all good but more ups than downs really for us.
My son isn’t prone to this or sensitive to this. He has had his blood pressure taken but he’s seeing medical doctor next month and we’ll do blood workup and if they think he needs any other tests, we’ll do that then. If everything else is ruled out, then it must be the meds.
I hope we don’t have to switch meds because except for this I really like him on it. It definitely has more ups than downs. It’s been a lifesaver for him.