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Invega Sustenna Questions


#161

Yes. I understand I must do something because this is killing me. I have support through forums like this and FB groups, specifically for parents of adult children with schizophrenia. And I am very lucky to have a loving, supportive family who love my son very much. I haven’t had to deal with the horror of my own family turning against him. And I have lots of wonderful, supportive friends, most of them don’t live anywhere near, but they do try to keep in touch. Some send loving cards to me. But it’s still not enough. I’m very depressed and have lost interest in almost everything. This is bad, I know, isolating and avoiding, and I’m not happy anymore. But right now, I barely have the energy or desire to even eat! I do have ideas about ways that I need to change my self destructive habits, because he needs me. I have tried antidepressants, antianxiety meds, to no avail. I’ve tried a little therapy, but I can’t afford it. Yesterday, I found out about a support group that meets twice a month, for families and caregivers who have a loved one who is living with serious mental illness. I am definitely planning to try this group out!!


#162

I wouldn’t be above sneaking pills to my son. I think he believes he’s still under court order, too, for his first committal, which was almost five years ago, and I’m not telling him any different. I know the civil liberties “nuts” would think I’m awful but I don’t care! I think we do what we have to do because we don’t have much choice, given the deplorable, criminal condition of the mental health system in this country!! My son has been on the invega sustenna shot since his diagnosis in 2013 and it did bring him out of psychosis for the most part with no side effects; didn’t gain weight, no weird tics or postures or those types of things, and I realize invega is a newer one and doesn’t produce the nasty side effects like the older meds, realizing of course this is a broad statement, and everyone who has schizophrenia has a different experience, just in general, has done well. But of course invega sustenna doesn’t do much for the negative symptoms. And my poor son has every single negative symptom on the list! I could go on and on.


#163

I understand. Although I’m practicing more self-care, I can get depressed sometimes. Last year I attended NAMI Family to Family 12-week training, it was the best thing for me. I was able to talk to others who were battling similar experiences without feeling embarrassed. Some family members were attending several support groups as a way to cope with the “New Norm.” I’m glad you found a support group most of the support groups are free, which is great. Keep me posted on your experiences.


#164

my son never had to take the pills…just the shot


#165

I don’t know if this can help, but it works with my son. He hates and fears the hospital very much. I tell him that I don’t want him to have to go back to the hospital and that taking his medication will keep him out of the hospital. This worked for many years on the injection. After relocating here, I became very ill and we missed an injection. He then did not want any more injections, and is now on the oral Zyprexa. His symptoms didn’t come back for a few months, even when he didn’t take the oral. I think it must have been that the Invega Trinza was still in his system. But now, when he doesn’t take it, his symptoms quickly come on. It is really hard to handle and scary. But I tell him he is having symptoms, that I can see the symptoms coming on, and that he needs to take his meds, and that I am telling him this so he can stay out of the hospital. When he is this symptomatic, it is hard to get through to him, and he tells me that I am schizophrenic and that it is I who need to take my meds, and stuff like that. But I just stay with trying to communicate my loving message to him, and he does finally take the meds. It is his fear of the hospital and realizing that I am trying to help him stay out of it that does it.


#166

Listen I can’t imagine being a mother of a schizophrenic and hopefully i never habe to know how you feel or what you are going through. I do know that as a mother it is our job to fix our kids to make sure they are taking the proper medication that we are doing everything we can to mame sure they are in the path to a physical and mental healthy self that i do understand and I mean sure we all tell our kids if you don’t do this to get better now you may have to get a shot later because well you know that fever has to come down one way or the other…i understand that part…i live that part…but now I’m going to tell you about the part of your sons world you know absolutely nothing about apparently …I understand your intentions are good you were only trying to help but you dont (and not just you but anyone reading this) youdont play off a schizophrenics fears you dont say what. Ever you have to to make them take their meds …i want to punch yoi in the face so instead ima take you to school…granted i don’t know what type of schizophrenia your son has …I have paranoid schizophrenia…and let me tell you a day in the life of my head is constant ducking hell…the voices why don’t you put headphones on one day amd put it on a talk radio show ok or whatever just make sure you match the same volume as everyone else is speakong to you because well that’s what makes it fun I then want you to go around all day with those headphones on amd o want you to be able to without ever hitting pause i want ylu to habe a conversation with everyone who wants to talk to you…oh amd dont forget you better just choose to talk to the people who love you because of you don’t well they will feel like your dissengaging from them and you might be ablout to habe another episode and then they worry and even if they dont say it lord knows you probably wouldn’t hear them anywH you can see it in their face and you know these people in your actual life like the ones in your head know you so make sure you try to interact with everyone you see…and if you are close to the person that you are having a conversation with i want you to remind yourself that they only talk go you because they feel bad or because they don’t want you to know what’s really going on …you may not even know what it is that they know but those voices you’ve been listening to on the headphones all day well i can pretty much guarantee that they have done told you a half a dozen times that this person has an agenda…who cares if its your parent of your best friend or any family member it doesnt mattwr how much a logic person knows this is absurd becaise somewhere you know its ducking craxy too …mental abuse people say it’s worse than any other abuse and to get out as soon as you can…how do you escape a mental abuser that literally lives in your head? Because thats what those son of a bitches that live up there do they play off pur fears they have fun with our anxieties …and everyone’s answer is always well can’t you get on meds…sure can but do you like how you feel after you been up 3 days? If ypu don’t know how that feels stay awake and figure it out and not the slap happy side np the part that kust feels like death that’s what we feel like on most of those meds intil we get adjusted …look im looking forward to getting this shot …o mean o habe tried so many meds and most don’t work amd if they do start to work and I get some quiet once in a while I feel like I’m dead i can’t wake ip i can’t get energy i just cant…anything…and add that to already not beimg able to live a normal life even tho i do wht normal people do i assure you i put on one hell of a ducking show for the people o love because well they want me to be ok and I need to be ok for them but fuck me running man i wanna put a bullet in my head every. Fuckimg breath . i take.so i drink becausw if i drink i can’t drink myself to sleep it quiets the voices bit those assholess are like a group of teenage girls sharing a ball of coke they never shut up but my point is understand. Your heart is in the right place and no i don’t know what level or what type your son has but i do lnow scaring him about anything more than he is already scared of or plying on the fears he already has is one of the shortest things yoy can do…

Im sorry if this was mean bit Jesus don’t fuck him up even more
…I’m vey self aware rovhr now bit one day i wont be and i hope someone is there to tell my family your hearts in the right place your just fu king up


#167

Meg–sorry the meds haven’t worked for you, but many have been helped by them. There are side effects to every drug; you have to weigh the benefits to the side effects. Most side effects become manageable in time.

I don’t have sz (a loved one does) but I have a neurological disorder that requires a lot of meds to mitigate my symptoms.

Heck, I had to inject myself with a subcutaneous needle once a week for 10+ years to keep my disease from progressing. And the side effects from that weekly shot were horrible–fever, extreme weakness and more. When a pill form became available, I switched and am much happier.

I guess my point is that many, many people take meds for chronic conditions. It’s not unique to sz. And if you believe in modern medicine, you’ll read up on the science based evidence of efficacy and hopefully take advantage of drugs designed to give you a better quality of life.


#168

Jan im not against meds I wish i could find one that worked for me I have been waiting to get my insurance to kick in because i want to try the shot I grew up on meds since I have migraines and as a kid had seizures. I wasn’t trying to imply that she shouldn’t encourage her son to take meds because she should i know if my kid needs meds for a disorder I’m going to try to encourage her to take them my main point on this was not to plah kff his fears of hospitals or anything to not add more fear to a situation that is already scary. I am. A mom so i understand where she is coming from like j said i know her heart is in the right place i just thjnk playing on his fear is wrong way to go about it


#169

I did understand that is what you were stressing and appreciate your valid point.
How can we share that staying out of the hospital is our mutual goal without playing on that fear. Perhaps by just stating that and only that? Do you have any suggestions?


#170

I am sorry when i read that you played on your sons fear of the hospital I imagined you standing in front of him i dont know playing on his fear. It wasnt until i read the words share that its a mutual fear we both have that I even considered the fact that maybe you tell him that you domt want him to go back to the hospital just as much as he doesn’t want to go. I guess what I was thinking was that you would stand in front of him and pretty much tell him he s going bacl to the hospital and imply its not any concern of yours… I’m sorry that. I got on the defensive side instead of asking more questions … And mom2 thank you for making me look at it from another perspective


#171

Meg, that is so sweet and kind of you. Thank you for saying that. We can all learn how to respect our loved ones and each other. I really think that is the lesson for all of us. How can we help each other ? Thanks for sharing your opinions. Being able to question yourself and frame of reference is an awesome skill that many of us are still trying to learn. I hope we hear from your perspective more often.

I have to share that our son is home and is really present for the first time in a long time. I think it is uncomfortable for him but he is choosing to be around us, his family and I am so grateful tonight for that. He is my only child and I love him so much. Thanks for listening. Be well!


#172

@slw and @daquilamarguerite1 you have probably posted elsewhere but I’m following this particular thread and wondering how things are for each of you and your loved one today? I see a lot of similarities that you described in our son, but primarily negative symptoms. Invega Sustenna seems to work well but he has never stayed on it for more than 3 months. Currently in a treatment program and that is going very well (he is very compliant with the program) but it is very early. The doctor there wants to increase the Invega 156 mg dose but I’m not sure that is the best thing until we see how the current dose builds up in his system over time. Will ask more questions. The concern is a history, including recently, of catatonia. He is also continuing to get ECT which started during last hospital stay when he was not med-compliant but eventually agreed to ECT and continues to go voluntarily. The schedule for those is decreasing. I certainly appreciate how hard it is to know what is or isn’t working and the right balance. I feel like we got our son back…can visit him often…but I know we have a long way to go, and that there will likely be setbacks.


#173

Hi hope4us.

The member slw no longer comes to this forum, but I can tell you the Invega Sustenna didn’t work out for her son, as it wasn’t controlling his positive symptoms. He instead went on Clozapine.

My son has been on Invega Sustenna for 9 months. He started on it at 156 mg while hospitalized in September of 2017. That dosage was increased to 234 mg during another hospitalization in March of 2018. This is the highest dose available.

Our son continues to experience paranoia on a daily basis, and during stressful events, he continues to experience olfactory hallucinations and sometimes brings up old delusional topics.

Regarding negative symptoms, our son has no motivation to do much of anything other than lay on a couch, use his computer, play video games, and eat. Hygiene is an ongoing problem, but we dangle carrots to get him to shave, keep his hair short, and brush his teeth. Right now he looks presentable. Before his most recent hospitalization, he looked like a cave man. A haircut and a shave were expectations we set for him to come home to us. I groomed him before he was discharged, and he’s been willing to keep up with it (with carrots dangled).

Some things that have improved tremendously are his ability to verbally express himself and his general mood. For the most part, he’s happy but growing bored of his mundane life and having no friends. The fact that he’s saying he’s bored is a good sign because he used to want to live in the woods and said he didn’t need friends. Also, his cognitive skills are also gradually improving, but the way he views the world is still pretty messed up in a lot of ways.

We’re really hoping the 234 mg dose will keep him afloat for a while. I think the summer months will help. If things fall apart again, our next med option is Clozapine. The main reason that wasn’t tried during the most recent hospitalization is because our son is paranoid of taking any kind of pill whatsoever, including pain medication. So, weirdly, he’ll take injections, but not pills.

In my experience, if a doctor wants to increase a dosage, it’s because he or she is not seeing the results they would expect by a certain period of time.

And there I go again, writing another book…


#174

@Day-by-Day Thank you so much for all this info. Plus it gives me inspiration to at least politely question or attempt to better understand the decision to increase medication dosage. I hope that time will continue to bring cognitive improvements for your son and especially that the higher dose Invega will help the paranoia. I know atypicals don’t normally do much for negative symptoms but they sometimes do help. We don’t know of any true paranoia (positive symptoms) with our son, but he has had delusions.


#175

Thanks Hope4us. We hope things will get better too, for all of us. Happy mother’s day to you and all the moms out there.:blush:


#176

I’m sorry I haven’t answered, but I’ll try to fill you in and this is for for Day-by-day as well. I don’t know how to tag someone, so hopefully you both will get my response. I know how on FB but not here.
Anyway, my son is 30 and has paranoid schizophrenia. He was hospitalized for one month, his first psychotic break (after what I think may have been a long prodromal stage but it’s hard to know really when, as we all know). He was diagnosed during that month and put on the invega Sustenna monthly injection. As Day said (too bad we can’t use our names lol!) , her son very paranoid about pills, my son too, but goes for the needle! I know. Weird. Sigh … just glad he’s compliant. I’m doing this on my phone so I might get things a little mixed up as far as who said what, and probably have told some of this somewhere, but here’s our story now: He lives with my ex his dad. Same town. He has always said he’s never had hallucinations, no voices, but I’m a little skeptical because he does mumble and smile to himself. His main problem with positive symptoms would be his delusions. And his major problem as I see it are the negative symptoms. He has every one! It’s so sad. I still cry almost every day. He just sits at home, pacing around the house smoking and listening to music. That’s pretty much all he does. I could go on and on but can’t now. More detail: He doesn’t drive. Afraid to be in a vehicle, but will go with transport for his shot. He doesn’t want a cell phone. Doesn’t read. Doesn’t skateboard or work out or fish or go for long walks, all things he used to do. Has no friends of his own but his sister (my daughter) and her almost five year old twins also live there so he does have some socializing there and my daughter has friends. He said one time how he doesn’t have any friends and then said, well, sister’s friends are sorta his friends but not really :frowning: This is hard on my little phone screen haha but hopefully I’m giving info that’s helpful or interesting. I would be happy to answer questions too.
I’m not so well. I’m sad almost all the time and I can’t think of anything but him. He’s my first born. He was the sweetest, cutest, most well behaved little boy in the whole world! And yes, I’m biased lol! He’s still such a nice guy. It just breaks my heart. He’s also very good looking. But he’s gained weight and teeth are looking bad. He does shower and stuff (didn’t before his first break and smelled horrible!) but his room is pretty gross! Ugh this illness just permeates my whole life, every day. He’s very quiet (poverty of speech). I’m trying to think.
He’s on the highest dose of the shot now. He was on the 156 dose but had a relapse (yes, even on medication) last July and I had to have him involuntarily hospitalized, I’m still not over that, so now he’s on the highest dose. He has somatic delusions. The main one is that he has cirrhosis of the liver (not true) because he’s an alcoholic (not true) and last summer when he had relapse he declared that I drank when I was pregnant (untrue) and that’s why he was Born with cirrhosis! He has said he has diabetes (nope) and one time he said he used to have Huntington’s (which is fatal!) and I have no idea how he even knows about Huntington’s since he doesn’t read or watch TV. Such a bizarre illness this schizophrenia is! Well, I’m sorry. I just can’t write anymore now. Please ask questions :slight_smile: Thank you for asking about us. I wish my son had a life.


#177

Hi daquila. Our son was on 156 mg Invega Sustenna for 6 months before having a relapse and involuntary hospitalization this past March. He’s now at 234 mg which is still not taking away his daily paranoia. It’s so debilitating. It seems like he can only have relative peace when he’s at home, during the daytime. Even then, he’s still in constant fear. The doors always have to be locked.

Our son’s ability to sit in a car while I or his father drives is still there, but it’s not at all easy. He’s a total “backseat driver”. I hope we never get to the point where he is totally home bound due to his paranoia about driving in cars. I’m so sorry that this has happened to your son.

How long was your son at 156 mg before he relapsed and was put on 234 mg? Did your son ever try Clozapine?


#178

He was on the 156 dosage about four and a half years before he relapsed. There was a situation at his home which was so stressful for everyone and as you probably know, stress is a very bad thing for them :frowning: and he held up with all his might, bless his heart. But the home situation was too much and he started to become more and more irritable (unlike him) and then tore up some photos, threw some things away and kept talking about the police, and these are all things we watch for in him, also put holes in walls with hammer, broke the handrail off the porch! He’s always been an even tempered, peaceful and loving person otherwise. I hate what’s happened to him.


#179

Thank you @daquilamarguerite1 and @Day-by-Day for sharing. (I learned to direct a reply to a particular person, you type the @ symbol before their user name.) It still amazes me how different our loved ones can be with the same diagnosis and even on the same med. Ours is responding very well to Invega Sustenna 156 mg. recently started (as he has in the past for short periods of time) but he doesn’t want ANY medication. He is in a residential treatment program and doing what he is supposed to be doing, including a short term “contract” he made to be med-compliant. I had a wonderful outing with him yesterday offsite. No signs of anxiety. However, today he called me…and all families are warned to expect the call in the first few weeks…“I don’t want to be here. I’m done.” But we have learned upon the advice of many that we can’t come to his rescue (if it is not life threatening) and that he can’t come home at this point because that is NOT in his best interest and it will not solve anything in regard to being med-compliant. He has some hard work to do ahead, and I acknowledged that this is hard (meaning it is hard to face one’s illness when you think you are trying so hard to believe and show the world that you are well). The program will help him work through although they can’t make him stay. There is a rough plan if he elopes, but I don’t think he will. We pray that he will stick it out but expect that the weeks ahead will be hard. As you know, even when they are “better”, it is hard to relax because even with a chance for recovery to some degree, this is not a linear process or static illness. In our case, we worry about future catatonic episodes, not knowing if Invega alone (if he would stay on it) is sufficient to keep that at bay. He has also been getting ECT with a plan to taper that off. But nobody knows for sure what will work, and all is vain unless he will stay on med and/or treatment. He is supposed to have some more assessments and possible neurological testing, but can’t predict now if he will cooperate. Sigh…