Despite some of what I have read on Invega from some people that did not like it, it seems like it has been a godsend for some of us!!! I am sooo happy for your son that he is feeling better and for you and your family to have him back!!.. I know the feeling and I feel blessed everyday… One note on the akathesia… when my son left psych hospital they gave him Invega injection, and prescription for haldol and one for cogentin which is for side effects… little by little doc decreased haldol to 1 per day… When my son began having akathesia, I cut out the Haldol, check with doc who said it was fine and that he could take up to 4 per day of cogentin…he only takes one… don;t know if your son is on a regimen similar or if he takes cogentin for side effects but if not… check into it…on another note… my son came right out and told me he had no libido…guess he is a bit less shy or more willing to share…lol…he has been joining in with family things too but my new goal is to get him into social things other than bars which many of his friends seem to do (hopefully to meet some new friends or perhaps a female companion)… if anyone has any ideas on social activities???.. Anyway… keep in touch and am thrilled that you shared GOOD news!!!
It might be a good idea to have some kind of alternate plan in case he starts to develop any recurring symptoms all of a sudden due to increased social pressures and any new environmental stressors that such an event could have on him.
That’s great news! Glad his paranoia is receding and you’re seeing some of his old self. I know it gives your heart some peace and I hope it continues:)
It’s been over a year on Invega Sustenna for my son and he still is doing well on it and seems to like it. It did take a few months to finally get him on the correct dosage though. The maintenance dose of 117 mg was not enough - he had to supplement with 3 mg Invega pills and then his injection was upped to 156 mg which proved to be the correct dosage for him. He stopped the pills once the full 156 mg completely kicked in. I may have already told you this, not sure lol.
FYI - my son’s pdoc told us about a recently developed 3 month version of Invega. My son is receiving Risperdal Consta, but he wanted us to be informed that such things are being developed.
Hi Vallpen,
Funny you should mention that. We started son on the 3-month Invega Trinza today. His pdoc recommended it and son is on board with it too.
So we’ll see how it goes. The monthly shot is recommended every 28 days, however, son does better on a 26-day cycle. So I’ll be figuring 26 X 3 and that should be about right for his next injection. I have taught myself to administer the shot. Big time and money-saver.
Do you think your son may switch to one of the Invega shots? I’m not sure, but isn’t the Risperdal Consta every two weeks?
Yes, it is every two weeks. A visiting nurse is scheduled to come to the house - it is working out okay.
Hello everyone,
We just returned from our trip. My son received another shot, (the 3 week Invega shot) 2 days before we left. Everything went extremely well. I am absolutely amazed! This is the first time in over 5 years he has traveled with us, and honestly, it is the first time in over 5 years it has been a pleasure to be around him. Trapped in a car/hotel rooms for over a week certainly is the litmus test, lol!
Yes, his affect is still rather flat, but he did socialize a bit, could laugh at funny things, and even attempted to engage one of his cousins in conversation at the reunion.
While at the reunion dinner, he would leave the room a lot to go outside to smoke and pace, but would always come back. He was pleasant and helpful.
He seemed to enjoy hiking in the mountains with my husband and I. (We are hikers and mushroom foragers and spend lots of time in the woods). However, he did seem to get scared a bit, and when he said he thought we should leave the woods, we did.
He is definitely not his ‘old self’, and that breaks my heart, but he IS better. For the most part, the paranoia is gone, and he is no longer tormented. Thank God for that. Watching his torment was so unbearable for me, I honestly do not know how he survived it.
While on the trip he ate like crazy. He mentioned that he didn’t want to have another shot because it was making him fat, and that he just wanted to go back to ‘being crazy’ because ‘it wasn’t so bad’ and that ‘everyone is crazy anyway’. I did not engage with this. I just nodded and said he should probably talk to his doctor about this. (I have learned over the years not to engage in any attempts to ‘convince’ him of anything), because it doesn’t do any good, and ultimately he is going to do what he damn well pleases anyway, so why torment myself?) all I can do is pray that he will take the next shot.
So far, I can unequivocally say that this is miracle drug. This is the most peace my son, and our entire family, has had in over 5 years since his first suicide attempt.
We switched off Invega because of weight gain, were doing Geodon, but have now gone to Risperdal Consta. I am also seeing a new stability in my son.
Dear Mr ( Mrs ) .
I’m feeling so sad for your family and i wish your son will soon be recovery .
I’m so glad your family found a solution. I hope he sees the benefit of it and continues to be compliant.
Please know that you are doing him a world of good just by being concerned and by overseeing his health. It warms my heart to know he has a caring guardian.
Best of luck to all of you.
I’m so glad things went so well for you all – that’s great news! 
Just as a side note, my son ate like a hog at first after starting on Invega Sustenna, but it seems that urge to eat subsided over time as he adjusted to the med. He gained a few pounds at first, but is back to his thin self.
His side effects were too much for him, and his doc took him off the Invega injections. His affect has been totally FLAT since I last posted, and he said that he could not live with the sexual side effects. (No libido, and said his ‘junk didn’t work’.
He is now on the oral Abilify and Lamictal. His akathesia seems worse now on the Abilify. His affect has not really improved.
I guess this will be more wait and see. I’m so sad. I thought that maybe we had found the magic bullet with the injections.
Oh, I’m so sorry to hear that it didn’t work out. I was really hoping it would. These meds are a total crap shoot. 
When I was 26 years old, I looked very much like your son. Now, I’m 65 and doing well!
Jayster
Glad to hear you are doing so well Jayster! Did you find a helpful drug regimen?
I’m still very much engaged with a treatment team to try to find the right meds and right dosages for myself. For example, typically In August, I need the most antipsychotic and the least antidepressant, and typically in December I need the least antipsychotic and the most antidepressant.
Jayster
That is very interesting that you have become familiar with the cyclic nature of your illness.
I’ve been reading your post for awhile, and I don’t feel I can offer any illuminating advice. But as I read your lines I read a lot of heartbreak and panic. Always know that your son will always love you. I also read in your lines some similarities I feel about the paranoia, and some guilt I’ve felt for bringing so much stress to Mother. Who dearly loves me, and is my best friend.
Are there any activities you and your son can do together? Does he enjoy books, or traveling in the car, even if it’s a short ride to the store?
Also, any church you all can attend to for a support group?
It breaks my heart to see mentally ill people suffer.
I served in the military for 4 years. I have a lot of friends who are ill now, mentally and spiritually. One of the first psych wards I went to was a VA one. The things I experienced there haunt me to this day.
I commend you for your strength and courage to reach out for help. Just know that you and your son are children of God, and you are loved.
Stay strong, please keep us posted.
“Oh Lord of Israel
God is great
God is One.” - Deuteronomy