My son is doing this now more than ever.
It’s hot to the stage where I pre-emt it sometimes before he actually says or does something .
He’s been on aripiprazole for 16 months and yes it’s helped somewhat, but the delusions never really go .
Last week his dr suggested trying a low dose of clozapine, the last few years my son has resisted any change . Also he has repeatedly refused clozapine due to the fact he won’t give any blood samples.
He’s not slightly more coming round to trying it, well he’s not as venomously against it (he’s very vocal)
I feel a bit anxious though as in my mind he’s not too bad , that sounds awful, sorry , what I mean is , he’s ticking along right now and seems somewhat at times sort of content with his life , which consists of staying in bed till 12-1pm then not doing much except on his laptop , eating and generally hanging around the house. Can be 4-5 days before he will venture out to local shop just, he goes nowhere else really.
What is really expected so you guys think? What would show a real improvement, would it be done motivation, perhaps a course, joining a gym, part time work, what would be successful for a med to really be working?
I don’t think I’m making sense here , but just a bit worries of change like this . I’m not letting him know though. Thanks for reading .
Jane, you are making sense, and I have the same question. What should we expect? Should we just continue to have low expectations? My son has been on Invega Sustenna for 16 months and still isn’t “functional” by societal terms.
I know we’ve heard of much better, more productive outcomes through medication, but are we just really unlucky?
I have a bottle of unused Clozaril. Still waiting…
we are in the same situation but probably harder.
my Son has been in a Locked facility and he has been taking Invega-sustena max dose of 234mg for the last 3 months and before that, he was taking Invega dose of 117mg for 5 months. he is better, talking more clear and calmer but still delusional.
About 10 days prior to taking his shot he would call me constantly like 4 to 5 times daily and asking me to get him out of the facility because he thinks his liver is being damaged with the medicine shot and he claims he has a heart issue but he refuses to take blood test.
He keeps refusing to take blood test and still not fully cooperating on Group theraphy at the facility.
I am too far away to do anything for him. I have guardianship but he manage to escape from my home and went to CA to hung around my brother but he ended up homeless in 2017.
he has been conserved with a County in California … where he is now.
he wants to stay in California and wants me to buy him a Condo there.
I put one the property on Sales hoping in another year, i can afford to buy him a small condo in California, but the issue is he will not continue with his medicine, I have a feeling that he will stop and we will start the cycle all over again.
I have with this cyle for the last 3 and 1/2 years and he traveled across state lines between several states and costing me resources and causing me high anxiety.
His conservator at the facility thinks that Clozarine will help him but he is still refusing to take oral medicine.
I know Clozarine/Clozapine is the best medicine so far. many people benefited from it. My brother in has been taking it for almost 18 years and he is doing better but he still sleeps a lot
Still hope that Invega dose of 234mg will help my son in the long run
Keep praying about it.
@Jarc, I do expect your son will get better and better with each month on Invega Sustenna 234 mg.
It must be so nerve wracking for you to have your son so far away. Based on our experience, the thought of not having our adult son with us, in our household, just seems so dangerous. Fortunately, we have a way to live together, but also separately when need be. Will this ever change? Will he ever be able to live independently and stay well ? I can’t even imagine it.
Could you set a boundary by saying you’ll consider buying your son a condo close to you, if that’s what you’d feel better doing?
@Day-by-Day , I hope he will.
the issue is he came to stay with me 3 times after hospitalization in the past and ended up stopping his medicine cold turkey and travelling. I am busy and I do not have help here in my States.
I am thinking to move to California in the next year where my brother is now and he will help me controlling my son.
I know it is long to wait another year and my son is not happy being in the facility. I go to visit him every 4 months but I feel he is breaking my heart when he keeps begging me to release him.
the issue is that he is refusing to come and live with me in my State now. he thinks living in my States will give him headache ( Delusional)
I will just have to wait for few more months and see if he gets better.
I am worried if I ask the facility to release him that he will end up on streets…
he is conserved now and the county is caring for him.
How do you think it will take him for get better in Invega 234mg?
I was hoping he takes a mood stabilizer like “depokate” but he still not complaint on oral meds…
Day-by-day
you said that your son is on Invega. is he on Invega 234mg?
you said that he did get better. is he working ? going to School?
how long did it take him to get stable?
does he take any other medicine like mood stabilizer or anything else like anti-anxiety?
@JARCA2016 Yes, my son has been on 234 mg for 10 months and 156 mg for a few months before that. It seems that many antipsychotic medications, including Invega Sustenna, also greatly help with mood stabilization. It took just a few months for his mood to stabilize. He hasn’t needed any other meds other than anti-anxiety meds here and there, but he refuses those due to delusions.
No, our son doesn’t work, go to school, or have motivation to do anything to improve his life. He has the “negative symptoms “ of schizophrenia.
Our son is still paranoid. His paranoia is what prevents him from having a normal life.
I’m sorry if our story doesn’t sound hopeful, but things are generally calm. It is what it is.
Jarca2016 , I really can emphathise here with you, yes it is harder for you with him being so far away, I do think yes he can still improve in time on invega , we perhaps were too fast to change from i vega (paliperidone ) in 2017 , that was the first depot he tried when being discharged from hospital.
Your son seems calmer, that’s a good thing, I’m sorry I’m not much more help. You are t alone though .
Definately similar here Day-by-day, that’s what prevents my son having a normal life, I mean when he goes out he mostly comes back with a delusional thought.
He walked with his dad to a different shop they don’t usually go to. (10 min walk from our home, on returning he said that a house near the shop, he looked in window and there was a guy that was in hospital with him back in 2016, he was there to spy on my son he said.
As you say things are calm that’s what’ll we seem to hope for at times.my mantra too, it is what it is…
Thanks Jane57 and Day-by-Day for your input.
Yes. it is what it is!!
This is frustrating that we want our children to get better but out hands are tied.
My brother who is a social worker in CA and he visits my son weekly thinks we should keep him in the facility for at least another 6 months.
This is not easy for me!!
Keep us in your prayers…
To give you some hope my son was on 117 and looking back he got clear enough to get at job at 2.5 months. I believe he still has it but his schedule changes a lot so when he’s home I’m always like - ut oh. But I keep seeing his paychecks come in the mail. He thinks the whole hospitalization happened because he wasn’t working so maybe that is why he got a job. He still has symptoms around not showering enough (1 time per week - may be 2) and his room is a mess. I go in every now and then and grab the trash.
Glad your son is working and functional at 80%. I have read that Invega will never take away the deulsional. Clozarine is the best medicine in taking away the delusions and hearing voice but it has more side effects than Invega.
Let me ask. Does your son accepts the shot without any problems. I heard from person who is taking the shot that it is super painful in the arm and leaves a big, painful lump. It must be massaged to get smaller and make the medication disperse better.
does your son experience any pain when taking the shot!
They are trying my daughter on haloperidol taken in a liquid form, which she prefers much better than pills…to deal with the voices… seems to be helping, the voices are much quieter… she said they sound like little mice now…
I don’t believe he has any delusions just the negative symptoms. He said it makes him a little queazy when he first gets it and a little weepy (from not feeling well). He said that lasts about 30 minutes. He has not mentioned pain. I have suggested that he can change where he gets it as one lady on here suggested. In the arm, in the thigh etc. Next time he comes to the kitchen, I will ask. I am home early today as we are having some snow.
Hi Jarca. My son has never had an injection lump or serious pain. I do remember reading some literature that mentioned massaging the meds in. I don’t know if that’s something that’s necessary.
DianeR/Dayby-Day
that’s something that’s necessary.
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I read about it and someone also posted about taking it and it was painful for him and also a person that my Son met in another facility said that it is painful.
Someone also said that ** shot in the rear/hip if far less painful than the arm**
I do not know how my son feels when he takes it. he does not tell me.
he just does not want to continue taking it because he thinks it will damage his liver. ( delusional)
The facility nurse told me: " they will ensure that we alternate the site and also instruct the nurses to use the “Z track” method" to be less painful"
The nurse supervisor also said the following:
“we have no results for those since his admission, however, the Invega Sustenna injection is highly unlikely to cause any apparent liver injury, but it is linked to slightly elevating the AST levels.”
i think it also depends on the nurse. Some are better than others. Lets see - he has gained quite a bit of weight which can result in diabetes per his doc and it can raise his cholesterol, so he has to have a blood test to watch that. How long has he been on the new level of invega. I tried to read back but I lost the thread somehow. I think you said 4 months? You are lucky to have your brother checking in on your son. I imagine he’s like some fresh air. The nurse pointed out to me that when they are there they don’t get fresh air, at least where my son is. Does you son have access to an outside area. Mine was in a short term place so he did not.
My son was placed on the invega series last year for three shots which did not work , and again after a 6 month break, (with lithium in the interim) he was placed on it this year. It does not work for him, He is now taking Haldol which is helping a little. His brother needed 20 mg of Haldol and 800 mg of seroquel to bring him out of psychosis. FYI they are supposed to have bipolar disorder with psychosis or schizoaffective and invega still did nothing for the psychosis.
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R, post:17, topic:7101”]
result in diabetes per his doc and it can raise his cholestero
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my son has been on Invega for almost 10 months now. first month he got 234mg booster short then he took 156mg 2nd month then pdoc took a blood test and noticed the liver AST level were elevated and she switched to 117mg. he was on 117mg for 4 months and he was getting delusional then back to 156mg then 234mg. He has been taking 234mg for 3 months now. he had only one time blood test at the beginning and he has not agree to a blood test since last June.
The principal nurse said that he is not required to take blood test but you are right I read that Invega can cause diabete and cholesterol.
the facility where my son has a basketball court and outside area and he can get fresh air few times a day.
My son took Haldol for a month but his pdoc said he made him aggressive. he is calmer in Invega but still delusional. but I can tell that he is getting better with time.
How old is your son and how long has he been on medicine?
good that he is doing Ok on Haldol and Seroquel… and it is good that he is taking oral medicine.
my Son still refusing oral medicine until now…