Family and Caregiver Schizophrenia Discussion Forum

Invega Sustenna


#1

Does anyone have experience with their loved one taking Invega Sustenna? My son just started them three weeks ago and so far they’ve really helped a lot with the positive symptoms, although I suspect he’s still having some symptoms but definitely less severe. Has anyone had any luck with the negative symptoms? He’s very quiet now. Hardly talks at all. He does make a joke and laugh occasionally. Still doesn’t want to reach out to friends or watch TV much, etc. So he’s for sure not the same. Was wondering if this will improve after being on Invega Sustenna injections for a few months or is this maybe as good as it gets? Thank you.


#2

My son did pretty well on Invega, but put on so much weight so quickly, the pdoc decided it was not worth it. But maybe we will try it again if he won’t keep taking the clozapine. Grrrr.


#3

Good to hear your son did well on it. I know it’s a hit and miss with these. I’m noticing some weight gain but we’ll see after a few months. I KNOW my son won’t take pills, at least at this point, so if they switch him soon it will have to be some other form of injection. Thanks for your feedback.


#4

Hello, My son did well on Invega too. He was very calm, but he didn’t like the way it made him feel, so he was put back on the pills Risperdone 3 mg at night. He was doing well on that too, but he has decided to come off the medication again. Be blessed!


#5

Calm is music to my ears. Sorry to hear he didn’t like the way it made him feel. I’m not sure my son would last long on pills. He just got out of the hospital with an Invega injection and 5 m of olanzapine. I found an olanzapine pill in the garbage a few days ago. I’m just so glad the Invega Sustenna is in him. We’ll see when we go back to the doc, but I’m going to push for any medicine that he can take an injection for (if they ever decide to take him off Invega). It’s so sad how they just don’t see how much they need it and fight the meds so much. Thanks for your feedback.


#6

Hi, Julie!

My son was on invega sustenna (injection every month) and he got aggressive, then he was given invega trinza (every three months injection) and got worse. Now he is on Abilify and he is still not doing well. You will just have to wait and see if it helps give it some time. I think my son’s body is just getting used to these medications but they are not doing anything. The other problem with my son is that he will not take any oral medications. I don’t know if your son is like this.

Hope he does well. Contact me anytime Roseo.


#7

Hi Roseo,

I’m sorry to hear your struggle with the medication for your son. How frustrating. Hopefully they’ll find one soon that will work well for him. It’s a bit harder to find one when you KNOW it has to be an injection. I’m in the same boat. I would be surprised if my son made it 5 days on pills if given the opportunity. It’s not an option for us unfortunately. One of the saddest things of this illness, in my opinion, is their inability to understand how serious it is and how much they need this medication.

Wishing you and your son all the best in finding something that works soon! Please let me know if you do. I would be interested in what works best for your son. Thanks.


#8

My son has been on Invega Sustenna, 156 mg. not sure if that is a lot, but I am guessing it is. He was diagnosed a year ago and this is the first meds he has tried. The down side for him has been tremendous weight gain. He said he would rather have this issue than hearing all the voices, etc. He also takes Cogentin and Celexa. These two help with some of the side effects of the Invega. So far I am very happy with Invega. It is costly, a month injection is $1400. And insurance does not cover this.


#9

Thank you for the feedback. I’m so happy to hear that your son is doing well on the Invega Sustenna. Sorry to hear about the weight gain. I’m noticing a bit with my son too but he’s only been on it for a brief time, so we’ll see how out of hand it gets. What does the Celexa help improve? Depression? Motivation? Just curious because my son doesn’t seem to have any desire to do anything at all. Was going to talk to the doc next appointment. Yes, the cost is unreal. Have you considered the 3-month injection of Invega Trinza? Not sure if it costs the same or if it’s even an option. I’m all new to this so just absorbing everyone’s info.


#10

The Celexa is for depression and may improve energy level. I have not seen any change in his energy level, if fact his sleep patterns can sometimes be a 15 hour sleep night one or two times per week. And usually a daily nap. This makes it very difficult to work, the Cogentin helps with any tremors which can be a side effect too of Invega. I am also new to all this and find this website to be most helpful. I can recommend a book,…Surviving Schizophrenia by E. Fuller Torrey, MD. You want the fifth edition. Hope this helps you. We, the parents, are such support to each other!!


#11

Thanks for the info. I’ve been wondering if any of the anti-depressants are helping with the negative symptoms. I know the Invega Sustenna is one of the newer drugs that are supposed to help some. My son sleeps 12 hours every night. It’s got to be the drugs because he doesn’t use any energy during the day :grin: I’ll check out that book; sounds like a good read. You’re great support! Thanks.


#12

My boyfriend was on invega and it did nothing for him. We had him switched to olanzapine and it has helped alot.


#13

Thanks for the info. Best of luck!


#14

My experience with my son is similar to others - the angry paranoid delusions seem to dissipate when the meds are working. The less destructive ones - say, about his supposed relationship with a rock star - seem to stay around, but those I can live with.


#15

Vallpen, I’m glad to hear the angry paranoid delusions go away. I’m concerned about the agitation and irritability so there’s hope! Thx


#16

My son has been on Invega injections since his hospitalization in February due to him stopping his oral meds. It took about 10 weeks this time to get back to his baseline.
He has been on injections for six months and doing better. The downside is the weight gain but not hearing voices or delusional. I go with him to appointment monthly. He is 33 and was first hospitalized at 18. So maybe it will just take a little longer to get better.


#17

Good to hear your son is doing well on the Invega Sustenna. My son has been on it for not quite 3 months. It’s working pretty well. I’m just not sure how much to expect. He still has a lot of mood problems. He goes back in Thursday so we’ll see what the doctor says. He’s also taking olanzapine (oral) and is taking it very well on his own. He sleeps a lot and has gained a bit of weight. Maybe his mood is as good as it gets, but I’m hoping there’s something else or something they can add to help a bit more. I’m fairly new to this as he was diagnosed with sz this year. So I don’t know if he’s at his best, if different meds will be better (or worse), or if he has some breakthrough that’s going to happen no matter what. There’s just not one great manual for this, is there?


#18

My son has been receiving Invega Sustenna injections for two years and seven months. He is enrolled in the Invega Sustenna Copay Assistance program. Here in Seattle I called 1-888-535-2850 in December of every year to ensure that my son is re-enrolled in the program and confirm his ID # remains the same. My son has gained about 30 pounds in the last two years. My son is very medication compliant and takes 12 medications per day; 4 in the morning and 8 each evening plus he gets an Invega injection every month. My son is a type 2 bipolar, schizophrenic and was diagnosed in 2009, He is 25 now and has been stable for nearly three years. The National Alliance on Mental Illness has been a great learning resource for me and the peer to peer support groups have been great for my son.

Issues with the Invega Sustenna Copay Assistance program.

  1. We have great insurance but the program only repays my insurance company at the end of the quarter so we received bills every month for the full amount of the medication ($1800/injection).
  2. Reaching the right people at the Invega Sustenna Copay Assistance program to confirm enrollment and re-enrollment can be chore.
  3. Weight gain; diet and exercise are critical.

We are not alone… As long as our children are alive we must continue to support them and each other.


#19

Thank you for sharing and for the contact number and info. I’m happy to hear that your son is doing so well on the Invega Sustenna and going to meetings. What I would give for my son to be medication compliant. That said, at this time my son is taking his meds as well as his injection, but he’s living with us at this time and I have to lay them out or remind him or he probably wouldn’t. Baby steps…


#20

This is very helpful. Thanks for sharing!