My son quit meds

Talk wiyh a mrntak health advocate. Its very hard to get and takes a long time. He must have copies of grest medical records and Not doing any drugs. My grandson was denied even though he had been hospitalized on many occassions due to his drug taking. I must say his last hospitalization they started him on Clozapine and his life changed. He is now drug free and working fulltime and making friends it has been a remarkable turn around this all took time like over 3 years but so worth it. There is hope good luck

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ZombieMobie,
how long you have Invega-sustema now.
My son started on Invega-sustena on April 2018. the first month took the first shot and booster shot. 2nd/month he was put on 156mg and thrid month was put on 234mg. his doctor told that his liver Enzymes get elevaled with 234mg. I was concerned and ask her to drop the dose to 117mg. and he was taking 117mg for almost 4 months and he is getting worse now and delusional.
I just requested from the facility to put him back on 156mg.

do you recall if you were still delusional on 156mg?
the that my son is non-complaint on oral meds.
let me ask a question: did your switch for 156mg from 234mg without blood test?
did you get better immediately on 234mg?

Hope everything is well with you.

[quote=“JARCA2016, post:42, topic:6106”]
i had some grammatical errors
here are my questions
did your switch from 156mg to 234mg without blood test?
did you get better immediately on 234mg?
are you taking another medicine with invega-sustena shot like Mood stabilizer(lithium, depokate)?

I was on 156 and went to 2e4 without a blood test. Never heard of elevated liver levels and my doctors always keep tabs on everything. I was symptomatic on 156. 234 cleared up everything in a few days.

Thanks for reply.
How long were you on 156mg before you switched to 234mg?
did you notice any elevated ASTs level in your last blood Test?
do you take any other medicine?

I am confused. His doctor in the hospital 4 months ago told me his liver enzymes were high and made me worried. this is why we switched to 117mg.
but now the Director of Nursing in the rehabilitation facility shared emailed me this:
“the Invega Sustenna injection is highly unlikely to cause any apparent liver injury, but it is linked to slightly elevating the AST levels. There has not been any reported cases of acute liver failure, chronic hepatitis, nor any effects on the bile ducts due to this medication”
She said also that the diet will help with his liver.

@CAAR2016

First off, I’m not a doctor so I can’t answer medical questions and I won’t try. I can only answer with my experience.

As before, I haven’t had a blood test for liver function or levels.

I’m not comfortable going into all of my meds.

I was on Invega 156 for 3 months before changing. I progressively got worse until we raised the dose to 234. It works for me. I can’t say if it would help anyone else based off my experience.

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ZombieMombie,
thanks for your input.
I think you provided a fair response.
I know everyone reacts differently to same medicine.

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I have been there several times. Hang in there. Breathe calmly as best you can and be there for him when you are able. I too am trying to learn to not let my son consume me. I have 3 other children ( 18, 22, 26) that need me just the same to love and support them.
My son went off his meds after over a year. Within 4 months rehospitalized, and now goes for injection and takes oral for anxiety and depression. Claims it doesnt work and not what he needs or wants. He wants to smoke week more than anything else in the world.

It is possible to live and manage with out meds in some cases. As long as the person is willing to manage the symptoms honestly and whole heartedly.

It is scary. My son roamed on his bike for 40 miles in pouring rain and still claims it was an adventure and something he needed to do.

Keep reaching out for your own support. Can only offer to him what you can. I know it is frustrating and time consuming. Just try to keep being you, and try to find happiness and an outlet for yourself.
It must be frustrating for him as well. And scary.

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I verified with one doctor that no liver problems with my son on 34mg of Invega-sustena.
His doctor switched him to Clozapine in march 2019 with mood stabilizer.
he sounds better but not convinced to continue taking his meds when he gets out of the Facility.
Hoping that he will continue to make progress in year 2020

Do you have interaction or meetings with the Facility? What does a counselor or doctor say about your son’s apparent inability to realize need for medication? Do you have an idea of when he will be discharged?

The longer he is on Clozapine, if all else goes well, can contribute to the possibility that he will gain insight to see himself as sick and needing medication. What is the plan after discharge? Can he go to a group home? Or what support services might your state offer? Or can you hire a care manager to be the “authority figure” to ensure he stays med-compliant (even if he complains about meds!)?? Also, it is important that he trust you. Learn the LEAP approach to gaining his trust and to getting him to do something YOU want (like taking meds) but for reasons that HE wants.

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Hope4us,
I am in constant contact with the social worker and the psychiatrist doctor - 2 of them. The recent issue that my son Obsessive compulsive disorder get worse on Clozapine. He was aggressive with staff. doctor had to take him off of Clozapine as of last week and he has been also on Prolixin shot twice a month and taking also mood stabilizer and zoloft.
Clozapine was helping him with his psychosis but made his aggressive. they have to monitor him now and see how he will do with only Prolixin shot. they may have to supplement with another antiphyscotic meds… will see
Today was really stressful for me. he was calling me every 2 hours and asking me to to take him out but trying to convince me not to enforce the meds on him. I am far away and still have about 2 years to retire from my job.
Since he is conserved with the county in California, I have to complete some paper for third part Assist in order for him to be discharged to me. it will take time. I have so much stress at work and cann’t leave to get him.
I know a friend over there is willing to take him bu my son’s conservator would not approve of my friend. he does not think he qualifies to take care of my son.
The best is for him to stay within the conservatorship and be referred to a step down facility as he is improving .
he is causing me some anxiety and worried about him. I have been praying about his situation and hoping he keeps improving. he sounds better and clear conversation and not talking to himself as he did last year in another place.
But Ie see that he still have some delusional thoughts. will be taking to his doctor this week.
I do not feel comfortable discharging him to me since he is still not convince of taking his meds… he takes the pills in the facility now and this is some improvement from last year.

keep us in your prayers

[quote=“CAAR2016, post:51, topic:6106”]
my plan has been is to move to California as soon as possible or after I retire. I started looking for work there but no luck yet. I have a place to stay with my friend who has been checking on my Son daily.
I hope I will be able to make this switch this year or early next year and be closer to my son.

It’s interesting that you mention OCD. There are a variety of types of OCD behavior. Was it the OCD behavior that was “aggressive”? In my own son’s case, I found out that the “delusional thoughts” were actually OCD and not SZ. But I’m certain that SZ itself is frequently the cause of delusional thoughts.

I was not familiar with Prolixin, so looked it up. I hope all of this helps your son! So he was taking Clozapine but now not wanting meds at all? Or maybe that is just the anxiety coming out right now and that will change as his anxiety decreases? Don’t forget the potential upside role of using LEAP with someone who is not treatment compliant. How wonderful to have a friend that will check on your son!

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Hi Hope4us,
My son is taking several medicine: Zyprexa, Proxilin shots ( twice a month) and Zoloft, lithium and Cogentin for Side effects.
he is better in term of conversing on the phone and behaving well with the Family friend who is his care taker and wotih my Brother and my Sister. but I can see that when he shot starts to wear off, he gets more delusional thoughts.
he keep on arguing with me about wanting to stop the shot. He is claiming he feels tense when it takes the shot. I talked to his nurse about it and she will let his doctor knows.
I see that this is a continuious struggle for life, but we must always hope for things to get better as they get older…
The OCD is doing something repetitive for x number of times. for example pushing the car remote button to open the Garage door 20+ times or running the faucet 10+ times, etc…
Sometimes, he feels like fist bumping family friend and another friend but not in an aggressive way, more in a friendly gesture. but it is still worry me if he does this with a stranger.
always praying.

Don’t forget LEAP (“I’m Not Sick; I Don’t Need Help”. IMO, that is THE most important tool we have to help our loved ones become treatment compliant. In your situation, there seems to also be an unusual (at least to me) combo of meds. If Clozapine was helping the psychosis, I suggest looking at Chapter 8 of the book “Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine” by Dr. Robert Laitman. There might be another way to continue with Clozapine and find the right combo of other meds to alleviate the OCD and aggression. No one doctor can have all the answers. There IS hope for a better future. I encourage you to keep seeking new ways to look at this and find solutions.

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Thanks for the Advise. he is taking little meds and doing little better. he is refused to continue clozapine. will see what the future reveals to us. things are manageable now.

Happy Holidays to you and your family.

Sometimes we just have to wait to see how things play out. Some persons with SMI learn to manage their illness to some extent. More likely, they just hide it, perhaps because they want to “appear” normal, and sometimes because they are afraid to acknowledge even to themselves that they have such a terrible illness. But each person is different. You know your loved one better than anyone else. When my son was doing well (and on Clozapine), I showed him this site as an encouragement and to help him see that “normal” IS possible. https://curesz.org/clozapine-success-stories/