Hi Hope. Our son has never tried Clozaril. We were really just hoping the monthly injections would work better than they have. He still has such strong positive symptoms. He’s still tormented with the same awful delusions and paranoia. It’s no way to live.
I really don’t want to switch from monthly injections to daily orals. We tried that with Zyprexa and he eventually refused them.
Nevertoolate, no our son never stayed at 234 mg. He went right to 156 and stayed there.
It does seem that 234 mg should be the next step, but if it too fails, we’ll have lost our opportunity to start Clozaril. We’ll have to wait for the next hospitalization. It’s such a gamble, either way.
I will see what the psych team thinks.
My friend the former FtF leader’s son finally found relief on Clozaril. She is a big believer in the med for those who aren’t getting relief with other meds. I know with our family members who suffer from anosognosia, anything oral seems like an immediate mark in the loss column.
Yes Hope, I know someone who is a big believer in Clozaril, as nothing else worked for her daughter. Her daughter now works and has a life.
But, her daughter never refused meds, right from the start.
It’s a whole different ball game for our children with anosognosia.
Did your daughter have more energy and less weight gain on the 117 dose. My daughter has been improving on 156. Then some eye rolling when they tried to give her 800mg for a 3 month shot. After the 3 months I made them go back to 156. To keep the eye roll at bay, I give her an antihistamine 25-50 mg once a day. I would love to try the 117 and see how that goes.
I’m wondering what dose of the 3 month they gave your son. They almost killed my daughter by giving her 800mg. We went back to the one month and thinking of trying a lower dose of that…like 117. She has been much better this month when I added an antihistamine to her daily meds. She is allergic to the Envega lol 
but it it is the only drug that has worked.
Hi Hailey. My son has never had the Invega Trinza 3-month injection. He’s been on Invega Sustenna monthly injections for 11 months, currently at 234 mg (the highest dosage).
Would you mind sharing exactly what happened to your daughter on the Trinza?
She was crying and hallucinating more. Heat sensitive and eyes rolling she is drug dose sensitive less is better.
NeverTooLate, does your daughter still talk about paranoid thoughts or delusions? Does she do or say weird things? Does she seem “normal” again?
Interesting as son’s doc said that was the lowest. I will ask again. Perhaps he meant that is the lowest they recommend.
If you go to Invega Sustenna website the have a 78mg and 39mg monthly injection dose.
My son seems completely disabled too and he’s basically stable but the negative symptoms and also he has always had anxiety. Won’t drive or ride in a vehicle unless absolutely necessary. Does nothing. Yes, very disheartening.
My son is the same, but five years. 
Those are the saddest things for us, too, never had a chance for a relationship and now I just can’t see how it could ever happen. I think of it as life is passing them by and there is nothing sadder. I’m still crying. It’s been five years.
Our son’s first psychotic break was when he was in his first semester away at college and needed to be hospitalized. He’s 35 years old now and just had his 7th and 8th hospitalization within a three month period. He attempted to kill himself by slitting his wrists the first time but thank god imwas staying at his apartment and heard him going something in the bathroom at 4 am. I saw him in the tub with wrists slit but not squirting blood so called 911 and he was hospitalized for 12 days. We thought he was doing better but declined again in august and said he wanted to die so was admitted again in the hospital being suicidal and in full blown psychosis. They took him off of the bento he had been taking for two years and slit his wrist with his wrist band patients wear then slit his inside if his arm by elbow where his vein is that they had to take him to emergency room and steric stitched that injury. After that they had a one on one assigned to him. 18’days this time. He got discharged Friday and is still,psychotic thinking the tv is talking to him and crazy mood swings even though he’s on 234 invega sustena injection a month, Zoloft, visterill, 2000 msg of depakote and 700 mggs of seroquel. He is also saying he doesn’t want to live so we can’t leave him alone. Lucky that my husband and I just retired in January. Just don’t know what to do. We did see a different psychiatrist that seemed very knowledgeable. He’s also a neurologist.
It just seems he is not recovering this time. Our son got a medical Mmjcard for a Tbi injury and was legally getting Mj. He was supposed to use card for CBd. Turns out he was buying high thc which doctors said probably caused the psychosis. I got card and shredded it and he doesn’t get any money and is living with us again after living I his own apartment for the past 5’years. He’s not getting better this time and is asking about getting his brain shocked. I have to read on this and talk to doctors. It just kills us to hear him say he doesn’t want to live like this. I just needed to talk to people who understand.
@Butterfly, I hope you don’t mind me responding - I believe Mom2 is taking a break from the forum.
My son is 36 and his scz started in college as well. Did your son ever have a relatively stable period of time on meds? 5 years was a long time on his own in an apartment.
I am so very sorry that scz has your son wanting to commit suicide and you aren’t seeing any signs of recovery yet. There was a dad on the forum whose daughter did have shock treatments. The shock treatments his daughter had were going well initially, he has not updated us in a long time. Often when people aren’t on the forum anymore its because things are going relatively better for their family members.
I can understand how awful it must be that your son doesn’t want to live like this anymore. Our children have difficult lives and we do end up sharing those difficulties. Really is good that you and your husband are dealing with this current struggle together. I’m glad your son has the two of you in his corner. Hope
Just incredible. Or in our case, son was discharged as “stable” when he was actually not talking, not eating or drinking. Although to the benefit of the hospital, they did not have available the ECT treatment he needed. So our wonderful medical system could not coordinate a transfer to another hospital where ECT could be provided. Instead, he came home for a week until he deteriorated to the extent we had to call 911 to get him back in a hospital, this time one that could perform ECT. In the meantime, he had more brain damage.
I am so sorry. I suggest you go to a site like NAMI.org and look up their resources on Suicide. You need to know now what to do if you suspect he is thinking about suicide or if he says that he is thinking about it. Stay in close touch with his doctor as it is not unusual that medications need to be changed or tweaked. He may be showing more signs of mood disorder, which may be reflected in the meds he is now on. There is also a Crisis Plan document on that site to help you put together a crisis plan. I urge you to do that.