Family and Caregiver Schizophrenia Discussion Forum

One Month on Invega-Sustenna

Forget to add… I am definately going to ask about the Vayarin for him … I have read a lot about the benefits of fish oil…

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i got back from the hospital today. i am suffering so much from the invega withdrawals that i turned to the last chance i had at making it through this, the medical community can do nothing for me. i will literally have to do nothing and totally rely on everyone and anyone to do the things i usually do for myself and for others if there is a chance of me not having permanent side effects or worse. i have learned so much information and talked to so many people who have taken this drug and the medical community. i have learned so much and it is final, even doctors nurses and psychologist are agreeing. there is too many people whos lives are being ruined from this. people have died from this medication. i dont ask this for myself, i ask because i have listened and heard what you all have said and experienced it for myself. tell everyone you know. write your message on every website and piece of paper you can. tell anyone and everyone. enough is enough. flood this world with the information and message that no one else will take this drug. we have had enough. do it for the next generation, do it for yourself, do it for all of us…most importantly, just do it. spread the word to everyone you know. we will be heard. we will be taken seriously. and this ends now.

This is the only med that has helped my daughter. She was in and of facilities on all the antipsychotics and nothing seemed to work. After she was placed on a conservatorship and placed in a long term inpatient locked facility the Doctor their placed her on Invega-Sustenna and Zyprexa (the Doctor is lowering her Zyprexa dosage to eventually eliminate it). Invega-Sustenna seems to be doing wonders. My daughter actually seems more at peace then she has ever been. She had “weird” eating habits and since her teens has not had a seat down dinner with me, or family. After taking this med, she not only eats dinner with family but she LOVES all kinds of food. She still has certain foods she obsessively eats like beans, and oatmeal, but she now will eat all types of food. Yes, she has gained weight and recently stated she needs to eat less and walk more to lose weight.

@invegauser I’m sorry to hear that you are having such a tough time weaning yourself off of Invega Sustenna. Finding the right med, or combination of meds, is really a crapshoot. Seems like there is no magic bullet, it’s just a matter of choosing the lesser of the evils. I hope you get to feeling better.

@Pinkeraser, I’m so glad to hear that your daughter is having good results with IS Injection. It sure is a blessing when our kids start coming around. And that’s an understatement!! :thumbsup:

That is a HUGE big deal! I’m so happy for all of you. My son starts the oral Invega today, and if all goes well, he has agree to the injections. However, as he has always been extremely sensitive to medications side effects, I am quite apprehensive about this med. the side effect profile looks terrifying. Also, if he does happen to have a negative side effect, he will probably refuse all future meds :frowning:
With the long acting injection, if they do happen to have a bad reaction, is there an antidote?

there is no antidote, and contrary to what you are told, it stays for a least 4 months in his body. Stick with pills if hes sensitive, thats my advice.

edit: other than that Invega is the drug of choice. Its more expensive but by far the best IMO.

@lovemyson I m so happy to hear this!!!

Is he still doing well? What about side effects? How old is he again? Thanks for your input. :smile:

Hi Luvmyson,

Thank you! When my son was first placed on the IS injection (May 2014), he was still kind of “wobbly”. His pdoc said it would take 2-3 months to fully kick in and he was right. We supplemented with the Invega pills as he was transitioning up from 117 mg to 156 mg injection.

Son has not complained at all about any side effects. I think he had so many from previous meds, that he really appreciates the lack of them with the IS.

As @Mottec said, I don’t believe there is an antidote. I’ve never heard of one, but I’m not sure about it. Pls keep us posted on how your son is doing with it. I hope it goes well for him :pray:

Thank you Holly!

The IS injection is working out well for my son. The problem he has is his tendency to consume illicit drugs; pot, pills of some sort, and alcohol. Seems like he keeps rotating from one to the other. For the past two months I’m pretty sure he was taking some kind of drugs because his whole demeanor suddenly changed. He started isolating, being mean to me and his Dad at times, hygiene got worse, etc.

We try our best to control it, mainly by putting the clamps down on his spending money and talking to him about how bad it is for him. Then suddenly a few days ago he was having really bad anxiety. Started communicating with me and his Dad about it, as we worked with his pdoc. I really think he had stopped whatever illicit drugs he was taking and was having withdrawal. Of course he would never tell me that. He is now much better and “back to normal”, talking with us, wanting to go places with me, took a good shower yesterday, etc. We kinda feel like Forrest Gump, we never know what we’re gonna get. :dizzy_face:

Son has never complained about any side effects, as he has over the years with other meds he was previously taking. He is 26.

How is your son doing? Any luck with any meds?

My son started invega sustenna injection on 22nd feb and and got another one on 1st of mar of 156mg. Before this he was on consta risperdal 25mg and then 37.5mg and 3mg risperdal pill two times a day for about 8 months which was not helping. I was very hopeful that invega sustenna will help. But as of today which is almost 2 -3 weeks, he has only gotten worse. Is it too early to evaluate. I was guessing I should be able to see some positive results. He was better the first couple of days. He got worse especially after the second initiating dose. He is kind of turned clearly maniac. Is it too early to say something or may be this is not the right med for him. Should I advocate for a different med?

Hi Pally,

I recall with my son, after the first initial doses, pdoc had him on the maintenance dose of 117 mg, which was not enough. We supplemented with the Invega pills 3 mg until his next injection, raised to 156 mg. We found out that it does take longer for the full effect than we anticipated. In reality, it was more like 2-3 months. Son had some really bazaar behavior during that transitioning time.

If I were in your shoes I would, of course, let his pdoc know what is going on and see what he recommends, if you haven’t already done so. He may want to supplement with something until your son levels out. I do think it might be too early to give up on it.

I really hope your son starts showing some improvement soon! Please keep up posted.

The doctor saw my son today and started him on 3mg risperdal at night time to supplement the injection. I am wondering if the pill will be given only during the last week when the injection starts wearing off or will be continued. His first monthly injection is still 12 days away. I will keep posting the updates. You guys are a big support. Thanks everybody.

I hope that the supplement helps your son! When we saw the full effects of the injection kicking in, pdoc stopped son’s 3 mg supplement of Invega.

For my son, the effects of the injections do not last for the length of time stated by the manufacturer. The monthly Invega Sustenna lasted several days short of 28 days and I have noticed with the 3 month Invega Trinza, it works out to about 66-70 days vs 84. My son is 6’1" and weighs about 170 lbs. It makes sense to me that for a larger person it would not last as long as on a smaller person. I’ve never seen anything official on it though.

Three days back doctor started my son on 250X2 of depakote and has also upped his injection dosage to 234mg which will be given after about 2 weeks. Hopefully this change will help my son. This forum has been really help to gain experiences.

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My son has been taking invega sustenna monthly 234mg, depakote er 1000mg risperidone 4mg, zyprexa 5mg and clonazepam 2mg. It has been a month since this regimen started. He has improved a lot but is still isolating himself and mostly stays in his room. And symptoms are quite visible as well. I think this is a huge amount of medication. Don’t know what to ask for or what to advocate for him at this point.

How large / heavy is your son. That does seem like quite high a dose of medications - but doctors frequently start higher because the priority is to get the psychosis under control, and then gradually reduce it.

Make sure you convey the exact level of symptoms that you see in your son. Many people write up summaries of this and track it over time and send it to the treatment team so that they know exactly what you’re seeing.

See details on this here on these pages:

http://www.schizophrenia.com/medsystem.html

http://schizophrenia.com/pdoc.html

Also - be sure to print out and take the email with you at the time of your visit so you can work through the issues one at a time.

And - try to organize the issues in bullet form (one separated clearly from the other and numbered) so you can easily follow in the discussion and make sure she’s addressed all the issues.

Also - you might also use this for every meeting (I recommend this for everyone)

Two-Way Communication Checklist (2-COM)

We have details about this here:

http://www.schizophrenia.com/sznews/archives/002917.html

This European study used the Two-Way Communication Checklist (2-COM), which is a questionnaire that was developed with the aim of improving communication between patient (who suffers from mental illness) and professionals. The 2-COM is a simple list of 20 common problems, or areas of perceived need that might be experienced by those with severe mental illness. The list includes problems with housing, relationships, money, lack of activities, psychological distress, sexuality, symptoms and treatment side-effects. In the study, patients are provided with the 2-COM prior to seeing their doctor and given simple instructions to help with its completion, guided on indicating which of the 20 problems apply to them and highlighting things they would like to discuss with their doctor during their clinic appointment. The authors report that using a completed checklist to guide discussion during the clinical interview extends the appointment by an average of 13 min.

As such, the 2-COM is a simple tool that can help people discuss their needs so that there can be better communication and changes in clinical management.

Congratulations! Keep us posted on his progress, please.

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That’s great. My son has been on injections for four months now after going off oral meds for a couple of months and having psychosis which resulted in a 25 day hospital stay. I just hope he continues with the shots because he is more stable on them. He is schitzoaffective for 15 years.

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My son is a type one bipolar schizophrenic & has been receiving Invega injections for 18 months now. I see the difference, yes he has gained 20 pounds over that 18 months but has been walking more and uses the community center gym early in the AM when very few people are around. My son is enrolled in the Invega copay assistance program. With my insurance coverage the $1500 per month injection costs me $25 out of pocket every month, we are very blessed to have such great insurance coverage.

My son still takes 9 medications per day and has for the last 3 years without much complaint thank goodness. If your not a National Alliance on Mental Illness (NAMI) member please consider learning about the organization and joining.

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Hi, What was it like before that for you? My boyfriend is struggling and has been on invega injection 1 month. but late now for his next one and I’m frustrated with that. He’s so up and down and i can’t seem to not react when he’s hearing things and his delusions. I try to look for posts of partners/bf gf/husband wife and get support. This is my first post.