Thanks Hope ! He’s been on court ordered meds for over a year now. He’s waived his right to a MH hearing two times - but may decide to go to the hearing when the renewal date comes up later this year. So far he’s progressing but I’m still not convinced that he doesn’t still hear voices as he refuses to watch TV and doesn’t listen to any music like he used to. He won’t talk about it if I ask him about voices so I’m just glad he’s stable and living with us during his recovery phase as I’ve read it can take a couple years for the brain to recover.
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Yes, that’s what they told us at FtF, it can take a couple of years to recover. Stability is a great thing.
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Steady1…the reason he kept taking it is because he was fearful of being put back in the hospital. He tried different drugs for the side effects but nothing worked.
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Yes, it’s wonderful to see such recovery, isn’t it? As a parent you can finally breathe again!
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Invega Sustenna has been amazing for my son as well. Hospitalized three times from October 31 through January 2018 and finally is functioning, working and driving. The turnaround is nothing short of miraculous. We went through hell but I feel like we are on the other side now - hopefully.
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Yes. Just trying to figure out who would administer my son’s injections was a rediculous challenge. The system is so beyond broken.
Hi Maggie. How long did it take for things to turn around for your son while on Invega Sustenna?
Hi! He had his loading dose and first dose while hospitalized in the beginning of January. He was transferred to an inpatient psychiatric hospital for 3 weeks where he had his second dose. I would say the difference was within the first month. By the end of January he was a different person. We just switched him to the Invega Trinza, which is the three month version. He had decided to go off his medication - abilify - in August. It was downhill from there and very scary. I was so scared to be with him and scared to leave him. Learned to manipulate the hospital system but each time it was touch and go whether they would admit him. The first time they let him out after 48 hours and he tried to kill his dad - thankfully my dad was there to pull him off of my husband. By his third hospitalization, we got lucky and he was transferred to the Bay Area, which is where they switched him to Invega, thank goodness. HIs psychiatrist had been trying to switch him to that for quite a while but he was unwilling. I’m not sure what has changed in him because he takes his injection with no argument and never brings up going off or anything. He is not smoking pot anymore which I think also makes a big difference in the effectiveness of the medication. I have a friend who is a nurse who will give him his injection and my husband can also give it so we are lucky in that sense as well. It’s been such a hard road. I’m hopeful, but not overly hopeful. I’m grateful for his functioning now and I know it can change easily. He still has no insight.
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I should also say that he was on oral invega in addition to his injection for the first two months. He was taking a 3mg pill for one month and then tapered to the 1.5 mg for one month. Now, just the injection. So, that helped with the effectiveness as well.
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Thanks Maggie for your response. My son has been on Invega Sustenna since his last hospitalization in September of 17. I had so much hope, but I just don’t see a light at the end of the tunnel anymore. It’s so disheartening. I can’t imagine my son ever working again. His mood is stable, but all of the other symptoms, both positive and negative, have completely crippled him.
Now that his illness has probably reached more of a baseline, I’m horrified to think what he would look like if he wasn’t even taking meds.
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Hi Day-by-Day My son is going on his third year of this illness and I don t really see him working again. He is medicated, fortunately, but his symptoms keep him in a very small world.
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Hi Irene. It’s just so unbelievable what this horrible disease can do to our children, just when the best and most exciting part of their lives is about to begin. I’m so sorry this has happened to your son. I’m so sorry for all of us.
I’m having a bad night.
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I know what you mean, it is so cruel and unfair that this happened to our innocent sons. Mine never even had a girlfriend or went to prom. So sorry and sad, we have no choice but to except it, unless some miracle happens. Having a bad night, too
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I’m hoping for a miracle.
After I wrote my last posts on this forum this night, my son begged me to take him to the hospital. We are there, at the hospital. This is our chance to try Clozapine, if they admit him.
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Wow,I hope it works as well for him as I have read it has for others. Why did your son beg to go to hospital? My son sticks with his zyprexa and is fearful of the hospital?
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At night, our son’s paranoia about his own personal safety often goes off the charts. Tonight, the paranoia was really hitting him hard. We’re striking while the iron is hot.
Things have been leading up to this for a while now, and we have often offered to take him to the hospital “to feel safe”. Tonight he took us up.
But, I assure you, the hospital has also been the enemy. Again, the iron is hot tonight.
And fortunately, we have a local and familiar hospital with a psych ward. And, in MA, “danger to self” is not so cut and dry.
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My prayers are with you for some relief for your precious son and your family. Please keep me posted.
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Hi, I have been reading your posts. I hope you and your son are alright.
I just read this just now:
There is a chance that your son metabolizes medication rapidly and this can be discovered in plasma levels of the meds… I don’t know if that is something his doctors would look into, but it seems like he is having a very hard time.
I hope he gets some real help and that you can rest while he is in the hospital.
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Thank you Hereandhere. Yes my son is having a very hard time. He’s been on Invega Sustenna 156 for 6 months, but he lives in fear. He no longer drinks, smokes pot, or does any other drugs. He has no job and no aspirations. His life sucks.
Thank you for the Psych Advisor link. I read the article and I really would like some more info as to why the Invega Sustenna didn’t work. The thought of going back to orals is my worst nightmare. I just don’t know if Clozaril is sustainable with a person with a history of noncompliance, nevermind all the other possible health risks that go along with it.
Once I get contact info for the new psych doctor, I will talk to him/her about the research findings discussed in the article.
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We are all really hoping for some good news for you, this would be his first try of Clozaril yes?