Our son just informed us he will stop his Invega injections. He was due for his monthly injection last week. He reasons that he has not heard voices for over a year and he now doubts whether he has schizophrenia. We tried to get him to wean off this med but he becomes oppositional when trying to discuss this. I am guessing that he discuss it with his psychiatrist and he does not want him to go off of it. As his parents, we are ok with him first lowering the dose but are worried about him stopping cold turkey. We have read about possible withdrawal symptoms and does not sound good. He has been on this injection for about 4 years and lately has been the most stable yet. In fact, he has held a part time job for a year now which is really amazing. Anyone else who has experience with this or suggestions? We will try talking with his case worker and his psychiatrist this week. We live in fear of him going back to being aggressive, suicidal and irrational. Thanks!
I think you should discuss with him that if he quits cold turkey that he will probably end up back in hospital . When i told my son that he got scared and continued to take his meds . He was and still is traumatised by the hospital . If that doesn’t work then try and bribe him with money saying that you love him and scared that he will go down hill if he quits and that you are willing to give him, for example $100 every time he takes the shot . It worked really well for one mother that i know . Another suggestion is to tell him this when he is in a good mood and when you think the time is right . Hope this helps , good luck 
You are very right to be fearful of regression. I would do whatever possible to keep him stable and on the right track. I kept my son on his meds initially by having legal guardianship over him but once he saw how well he felt and that the voices left he was on board with continuing on his own.
Thanks so much, Linda, for the helpful ideas. I will update my post and will hopefully have some good news.
@HelpingT is your son in therapy? Hopefully the psychiatrist and a therapist and talk with him about staying on medicine. What about group therapy? Maybe it would be helpful if he heard from a peer to help him stay on meds. Good luck and I hope he stays on meds!
This is hard. I hope his psychologist, and others convince him to stay on meds. Would it be possible to talk to him about advance directives, explaining him clearly what he expect you to do if… and put it in writing? This may give him the idea of the seriousness of his illness. Or tell him if he please give himself another 3 moths on meds? Hope for the best.
Thanks for your response. Our son has been on board with treatment plans, monthly injections, and oral meds for the past for years. He has admitted to his schizoaffective disorder and lately the most stable he has been. Now he doubts his diagnosis and wants to stop just his injections but will take the mood stabilizer. He turned off his phone because once he makes his mind up he doesn’t want to talk about it : / I hope to talk to his psychiatrist and case worker this week. I sent him an article about withdrawing from Invega.
Thanks for your response. He did say that he would go back on injections if his voices come back. I am worried both by withdrawal symptoms listed and disordered thinking that goes with it. We did recently sign papers for me to be his healthcare power of attorney.
Dear hopeisahead, I was wondering what you were thinking about advance directives? It came to mind that is it possible while he is thinking rationally that he would give permission for us to admit him if he relapses back into his delusions and psychosis? And would that stand up with the authorities.
When he first had his psychotic break, it took us along time to get him admitted because he was not openly dangerous to himself or others. It was not until I recorded a conversation with him in which he described how he was going to kill himself and others around him. I then took it to the police (we have a unit that specializes in mental illness) and they helped us get him admitted. We hope not to have to go through this again!
Check resources in you local NAMI website. If you already have power of attorney wrt to health, I guess that would do it. At least the advance directives should give you permission because he gives you permission to be informed about his condition and treatment. Check it out to see if that is an option for you. I do not have anything of that because my son is noncooperative as of now. Forced treatment is another whole different level. In my experience with my son they never force treatment because he is highly functional and non-threatening while in the hospital and forced treatment will be unethical. There are no easy solutions.
I really hope everything works out. Your post really gave me food for thought as I honestly don’t have a plan in place if my son woke up one day and said “no medicine for me” I take it for granted he won’t do that, but in truth any patient can do it anytime. It sounds like your son lives independently, my son still lives with me. Maybe if given the opportunity you could bring up the topic of him maintaining his independence. Perhaps that will give him food for thought about changing a regiment that has worked for him for years. Just a thought. Best of luck.
Hi Catherine,
Since I last posted I have worked today with his case worker who also works closely with his psychiatrist. The psychiatrist proposes to go down on his Invega dose. We additionally offered that we will give him $50 every time he gets an injection and thankfully he has agreed to this for now anyway. We are definitely not above bribing him!
An another note, tonight we had a NAMI support group meeting and discuss the idea of a document in place that might allow you to make decisions for him if he gets delusional. I guess there is a document in Wisconsin called Supported Decision Making, but have to check out further to see if its what we are looking for. One person at the meeting talked about a document in the state of New Jersey that has a “Proxy” document that allows you to make decisions for them which I wish we had here.
Someone at the meeting tried to activate their POA for healthcare when their son needed to be hospitalized and it does not apply to mental health disorders! We will continue to research this.
My son has stopped his injections, but was weaned off it. Been here before, it is very common, for them to go off their meds, because they don’t think they were sick… Because the meds are working.
So far, so good. But he still takes his antidepressants. He lives with us and we will be here if things go wrong.
You are doing your best, by keeping in touch with his caseworker and doctor.
Thanks, Serenity. I hope your son does well.
Our son doesn’t live with us because of a long he of addiction. But we are very involved with his life. It seems every week there is some crisis. This week he lost his phone which we had just got him a née one. I am hoping he will agree to stay on this lower dose of injection awhile. He has been very good about picking up his oral meds twice a week which is a blessing.
How long did your son take to wean off his injections?
It took about 3 months he got a shot every two weeks.
Hi Serenity,
Thanks for you response. It helps to have someone else’s experience in coming off of meds. Was he on the Invega injection?