Invega Sustenna Questions


#141

Looking for anybody that has been victimized by the invega sustenna shot I have been victimized I know that there are people out there that have either lost loved ones or have had their lives impacted by the shot
I can be reached at 508 285 3143 or ryanorourke06@gmail.com


#142

How have you been victimized?

The shot is not yet 100% effective for my son, but he is also having 0 side effects.

Every drug is not going to work for all people, but I get so tired of people saying a specific drug is terrible because it didn’t work for them or had side effects for them.

I had to listen to it for years while he was on Zyprexa - that also worked for him without major side effects, until it stopped working.

Invega seems to have even less side effects than Zyprexa - for him anyway. Again, I know everyone is different.


#143

The shot messed me up royally it’s hard for me to stand never mind the cognitive damage consider your son lucky there are plenty of people that are not so lucky some have even died from the injection.


#144

My son is just like yours! He’s had anxiety most of his life. He’s. even on invega shot since feb 2013. Nothing else until recently Paxil for anxiety. But back to the invega. Works for psychosis but hasn’t done anything for negative symptoms, which is typical anyway. Actually, he started out very up and wanting to do some things like go with me in my car, eat somewhere, go home. But then he became more and more withdrawn and never goes anywhere except over to get his shot. He smokes pot and drinks beer and chugs soda from the big bottle and of course, smokes cigs all the time. He hasn’t gained weight from the invega. He has no social life outside the home. Ahhhh …


#145

Again, so similar! My son admits to anxiety, denies depression and has no comment basically on the schizophrenia diagnosis so I really wonder what he thinks of it all! He’s starting to talk more tho I guess because of the Paxil.


#146

I believe the Invega Sustenna (234mg monthly injection) is no longer working for my son. He discontinued this medication in June 2015 and after two hospitalizations, he was back on it in February 2016. He responded well 2014-2015; he was able to return to work and was more sociable. Now with the monthly injection and a mood stabilizer (Trileptal) his moods are unpredictable and his improvement has been very slow. I also noticed he becomes more paranoid and resistant to medication when he smokes marijuana. I am requesting his doctor change his medications because I am afraid things can escalate quickly; he has already been hospitalized twice for medication change and they continue to keep him on Invega Sustenna because he is usually medication non-compliant. I also noticed he eats a lot when he is not smoking marijuana, no significant wait gain like when he was on Zyprexa. Omg…the sugar intake is off the chain. He will pour a glass of milk and put a lot of sugar in it before he drinks it. He also cannot stop consuming soda. I have stopped buying soda and limited the amount of sugar in the house. I do buy Gatorade drinks because he is on Trileptal because it causes low sodium levels.


#147

234 mgs is high, isn’t it? My son is on the monthly invega shot at 156 mgs which I believe is the maintenance dose and is pretty standard. BUT recently he was prescribed Paxil (a pill) and it’s been a little over a month. Reason he was put on the injection was because he wouldn’t take pills. Well, guess what? Friday, he was committed to the hospital, his second forced hospitalization. His first was January of 2013, almost five years ago!! I just knew this added medication was going to be a problem!!! He also was chugging soda all day! But with the Paxil, he didn’t drink nearly as much soda. Oh, hell fucking no!! He went back to alcohol!!!


#148

That’s the highest dosage. After you hit that point, the most they can do is give it to you more frequently.


#149

I know. In October his psychiatrist was considering giving the 156mg every three weeks but based on his insurance we had to try the 234mg to prove he needed the injections more frequently. I have hospitalized him twice from November to now, trying to have his medication reviewed. On oral medication, he is too non-compliant. Now he has a new psychiatrist, who is more focused on increasing his Trileptal dose than changing his anti-psychotic medication.


#150

234 mg is high. I understand your concerns regarding your son. Having a child with a mental illness is extremely challenging but add on substance abuse problems, my head is about to explode. I keep telling my son that I can’t deal with him using marijuana and increasing his psychosis. It is too scary and exhausting.


#151

For my son, the Invega Sustenna - even at 234 mg, and I believe even if they had given it to him every 3 weeks, just wasn’t working.

I actually think he got more benefit from the Trileptal, but that wasn’t enough either.

He’s doing pretty well on Clozapine now - he’s not perfect, but he’s much better. He still has some delusions, he still barely goes out except for the doctor & his labwork, but he’s not up & down, he’s not angry, he’s not miserable every second of the day.

Today, I came home and he was laying out in the sun on the deck trying to get some color & he got in the pool for maybe 15-20 minutes. Now, he’s watching the new King Kong movie.


#152

Since joining this group, I have followed your experience with Clozapine. My son’s biological mother is on Clozapine and Depakote; she was non-compliant for years before she has to be placed in supportive living. He has three older siblings who never developed schizophrenia, thank God. I see some improvement with my son but the week before his next injection, he appears unstable (responding more to internal stimuli, agitated, and restless). He is still challenged by accepting his illness. He will be on Clozapine, I’m sure. Depakote, not, because he had an allergic reaction in the past. Clozapine is a scary drug.


#153

It seems to agree with my son. His blood work is fine, and he’s not having any other side effects.
He’s not even sleeping too much.

Of course, he’s only on 200 mg/day split between 2 doses.

He told his doctor that it feels like he isn’t even taking anything - she was very happy with that.
I think he needs to go up at least one more step, but I’m not rushing it. Maybe I’ll be wrong this time.

I, however, took one of his 100 mg pills by accident & it floored me for 4 days.
He has an incredible ability to metabolize drugs - and it’s not like he’s a huge guy.

I’m sure Clozapine isn’t for everyone, but it certainly seems like the right drug for him.

On the Invega Sustenna, he came out of the hospital after the initiation like a new person - when that wore off, we never got it back. Even on 234 mg, taken 1/2 a week early, it wasn’t sustainable for him - his last hospitalization was 5 days later. For me, that was the end of it. In the hospital 5 times in 10 months was too much, especially when he was fully compliant the last 3 times.


#154

That’s positive, I remember you saying he regularly said he would go in the pool but almost never did.


#155

Slw, that sounds so good!


#156

Well, since I was last here my son had to be hospitalized. I had to get him committed and now he’s on the 234 mg dose, which they said is the next highest dose, which when you consider it’s spread out over the month doesn’t seem so much higher. However, I didn’t know it was the highest dose! Gawd! The poor guy! Plus Depakote which is used for bipolar since it’s a mood stabilizer, and also for treating seizures, which he doesn’t have. BUT Depakote is being used also for schizophrenia to speed up the recovery or stabilization process so as to be able to release him as quickly as possible and free up that psychiatric bed! He stayed two weeks.


#157

I’m not sure whether he’ll be kept on the Depakote. In some cases, as I understand, it’s used temporarily.


#158

My son also doesn’t like taking pills. This is a nightmare! I’m so afraid someday he’ll just refuse everything. Then what?? I’m already so worried and crying all the time, not knowing what might happen to him. Especially if I go before he does, which is likely. I can’t even bear to think about it.


#159

I honestly think when they added a mood stabilizer, it helped more than the Invega shot did. But, Invega sadly just wasn’t enough for my son.


#160

Hopefully, you can find a good support system. This new “Norm” is difficult. You have to find a way to stop worrying, which is difficult, but find some peace. Currently, I am focused on prayer, meditation, and working out. This helps me manage my emotions. I try to get 8 hours of sleep so I can cope.