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!!
Thatās great - Iām sorry it took so long though.
They just started my son in our countyās Intensive Community Treatment program. Itās 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. Iāve been told that since she is dedicated to this team and only works with this type of patient that sheās much more aggressive.
Right now, Iām 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 heās been seeing for the last few months today.
She wouldnāt give him his shot early, even after I told her heād 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 donāt think she would even have done that if I hadnāt interrupted her to say he would be back in the hospital before Monday if he something didnāt change. She said to give him 6 mg, but Iām going back up to 12 like the hospital prescribed when he left. I should never have stopped it on her recommendation. Actually, I wouldnāt 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, Iāll respect his wishes, but Iām not going to seek it out.
His caseworker was kind of surprised that she didnāt give him the shot too, and said while she wasnāt a doctor and couldnāt tell me what to do, I should just make sure I tell the new doctor heāll see on Monday what heās been taking. This new one is on the intensive team and specializes in SZ - sheās supposed to be much more aggressive with treatment.
However, if Invega Sustenna continues to cut out on him before the 3-week mark, I donāt know that this will be a sustainable treatment option for him.
Iām 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 heās 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 - Iāll definitely let you know.
Iāve been getting the Invega in him orally this weekend, and heās 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 theyād 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 heād try to hang in there until Monday - then wanted a Zyprexa (it had been good for years, but wasnāt working lately) so I figured it couldnāt hurt him. It almost instantly calmed him, so I donāt know now. Iām 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 Iām 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 donāt 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 heās looking like heās settling in to go to sleep on the sofa.
Today, he talked about some of the things heās afraid of.
Heās afraid of people - thatās a constant that doesnāt change.
And, heās afraid heās an abomination and not a person at all. Thatās heartbreaking to hear.
Heās afraid that Iāll die and he wonāt be able to live without me. I explained the Intensive Treatment thing is supposed to help him learn some independent living skills, but Iām 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), heāll 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.
Heās afraid that no one would want to buy our house (he wants to move to a new one) because itās not in spotless shape (no one in the house is careful with stuff & we have 2 dogs, 2 cats and a rat - Iām 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 heās 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 itās meds or therapy or something else, and he seemed kind of OK with it.
Weāre 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 heās sleeping.
I guess all the grandiose delusions were his protection from all these fears. In those thoughts, heās all powerful and all knowing.
Thatās 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 itās 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 didnāt want to change anything much today because then he might get paranoid about her. So, Iām guessing sheāll build some trust first, hopefully get him more stable than he is now, and then weāll see.
Heās 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 couldnāt get out. He said sure he could to Trick or Treat - then got mad when I said it wasnāt Halloween.
So, another day starts ā¦
Update -
My son once again refused the oral meds 1 day after he said he would take them, but Iāve 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. Thereās 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 Iām 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 heās starting to stabilize, donāt rock the boat - there will be plenty of time to see what they can decrease after heās had a few good months behind him.
Their goal is to have him on the shot only because heās not med compliant on pills - and they want to give him the least amount of drugs possible.
Because he doesnāt exactly know heās taking the Invega pills, Iām 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 thatās after a year or two of stability. Itās possible that going up to the 234 he wouldnāt need the oral. Good luck. It sure is a trial and error, isnāt it?
Iād love it if he didnāt need the oral, but Iām nervous about finding out.
The 117 mg didnāt 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.
Itās possible itās not the best drug for him. Iām sure youāve 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 heās doing fine as far as psychosis but heās 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. Iām really nervous theyāre going to switch the meds altogether, which they may have to, but Iām anxious about it. He has to stay on an injection because he was one that wouldnāt take meds, and could easily go back there. Iāll 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 itās too dangerous.
My son doesnāt really have any side effects on the Invega other than he has a very, very healthy appetite - and I think heād have that on any anti-psychotic that works for him.
Heās 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. Iām 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.
Thatās been my sonās 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, heās miles ahead.
I just canāt 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 donāt match up with what my son gets so Iām perplexed. Anyway, he has moments when he just blanks out. If Iām watching him itās just a blank moment and his coloring changes to pale, then back to normal and heās fine again. He says things go white. Heās never fallen down. But he also is constantly taking deep breaths, kind of odd. I think itās probably the Invega but I sure hate to switch. He also paces constantly, nonstop, but it doesnāt bother him. Maybe it helps keep the weight down from the huge appetite - who knows - trying to look at the bright side. I donāt care about the pacing, just wish the blanking out would go away. Maybe thatās what they consider to be lightheaded, which is a side effect. Heās taking a side effect med for it but itās not doing anything for him.
Hi JulieAnn
Iāve just looked on line it says along the lines of the 156 dose hydrolises to the amount of 150 of active paliperidone. So itās the same dose I guess maybe just analysing the content further. ?
It does sound worrying when your son does that. Maybe itās 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.
Take care.
Hi Jane,
My son isnāt prone to this or sensitive to this. He has had his blood pressure taken but heās seeing medical doctor next month and weāll do blood workup and if they think he needs any other tests, weāll do that then. If everything else is ruled out, then it must be the meds.
I hope we donāt have to switch meds because except for this I really like him on it. It definitely has more ups than downs. Itās been a lifesaver for him.