Hi everyone. Son has been on his maintenance dose of Invega Sustenna (117 mg) going on two months now. First dose in early May was 234 mg, one week later 156 mg, and then monthly maintenance is 117 mg. He seemed to do very well at first, but husband and I are starting to notice some symptoms coming back, such as delusional thinking, paranoia and a few hallucinations. Nothing near as bad as before he started the shots, but still are there and troubling.
I’m just wondering if anyone has had this experience and if so, what was done. His next shot is not due until the 16th of July (and we moved this date up by three days).
We feel like we need to step in, so I’m going to call his pdoc tomorrow and see what he recommends but I always like to hear first hand experience if anyone has any.
Your son could experiment with different meds to see if one or a combination of meds work better. There is no magic pill. Even with the meds, I still have paranoid thoughts. I tell myself they are only thoughts. I don’t act on them. I also do many things to cope with my symptoms. I go to groups, walk, talk to friends, go to the movies, talk to my therapist, talk to my doctor, go to church, work, take classes. I don’t expect the medication to be some cure all for my paranoid schizophrenia.
Well injections are a little odd…usually that is for people who are agitated and need to be put down for a nap. I suggest getting on pills. A higher dosage. Sounds to me like he is on too low of a dose. With my med, just 20mg less means a bad time. I take 120mg of Geodon orally every day.
I’ve never had the monthly injections, but I’ve been on psych meds since I was 13. My psychosis got pretty bad despite being on high doses of two antipsychotics. My old pdoc recommended ECT. It was the only thing to make a difference. Even with meds and maintenance ECT I still get breakthrough symptoms. It doesn’t effect my functioning, so I’m ok with it. Your son may always have symptoms, but if he is able to function that may be the best you can hope for. In therapy I learned ways to cope, and that has helped. Is your son in therapy? Group therapy made a big difference for me. I’m considering going back, because I’m having a hard time while we are switching meds, with reducing the ones I’ve been on and adding another. I could use the extra support. I hope things work out, and definitely communicate with his pdoc. I don’t know where I would be without my mom fighting for me.
Son has trouble staying med compliant when he has to take pills every day. We’re going on five years since his diagnosis and he has always had trouble being diligent with his pills. And as a caregiver it’s a stress every day asking, wondering, hoping if he’s taking his pills.
I think he is too. 117 mg is the standard monthly maintenance. The next one up is 156 mg. I was really hoping to avoid an increase since he may be more likely to develop unwanted side effects. But I think the pros will definitely outweigh the cons at this point. When he gets like this he tends to do stuff that gets him in trouble. And we sure don’t need any more of that.
Son has been to a few therapists over the years, but he always quits. I wish he would go - I think it would really help him. How did you find your therapy group? Maybe son would be more receptive to that, idk. I think it would do him good to be around others going through the same thing.
I don’t know too much about ECT. Honestly it sounds pretty extreme, but it’s something I would like to research. I’m sure it’s come a long ways from the olden days. I’m glad it’s a help to you!
Good luck on your med switch – hope it’s smooth sailing for you soon!
ECT is not a good idea from what I have gathered. It is done under anesthesia these days but rarely cures anyone, just makes them better for a little while at best. Or fucks them up worse. Therapy is quite effective at keeping schizophrenics highly functioning but it requires compliance, honesty and willpower on the patient’s part. The patient must want to get better and do things they dont want to in order to get better.
I started going to Adult Partial Care and they determined that I was too high functioning for it and referred me to Intensive Outpatient. The group therapy was great. It was small and although I was the only one experiencing psychosis, the counselor was very knowledgeable. The one session I was talking about my sexual abuse and the demon started to harass me. I became really scared and verbalized what was happening. The therapist had us all play the distraction game and within three rounds, the demon went away. I was floored. Even though I could see him, he obviously wasn’t real because naming cheeses and cereals wouldn’t make a real demon leave. It was just a hallucination and delusion, my mind had fooled me. Other people in the group mostly had mood disorders and substance abuse problems, but I got a lot out of it. In addition to group three times a week I also had a one-on-one session with the therapist.
ECT sounds scary, but is very humane. It not only gets rid of the psychosis but also allows the meds to be more effective. The sessions are only 15 minutes and you are asleep during it. They give you a muscle relaxer which paralyzes you while you are asleep so you don’t get hurt when you have the seizure. I did have two traumatic experiences with it that make it hard for me to go. I woke up after the treatment while the muscle relaxer was still in effect. Because I couldn’t move, or control my breathing, I thought I couldn’t breath. They have perfected my dose since then and I haven’t had any problems since. This was two years ago and I still have panic attacks every time I go. I take Klonopin the morning of and last time the nurse held my hand as I was falling asleep. ECT is my biggest fear, but it has helped so much that I force myself to get it. Living psychotic was hell. I was constantly scared and couldn’t function.
Things will work out, sometimes it just takes time. Your son will get to the point where he is done with being sick and that will motivate him to do everything in his power to be well. I began to change when I realized I was the one who was responsible for my happiness. I couldn’t rely on any one else to fix me.
There isn’t any treatment that can cure you. ECT has saved my life! If it wasn’t for ECT I would be living in an institution. Don’t judge what you don’t understand.
My son was on Invega sustenna and never took the 117, but diagnosis is schizo-bipolar. Once he got adjusted (10 wks) it never lasted the full 4 weeks, they would up the dose trying to get it to last a full 4 weeks. Then it would be too much first two weeks perfect the second two weeks, then we went back to 156 and supplemented the last week. A Nami friend said her son was on it and it never lasted 4 weeks and dr recommended supplementing the last week. Son too has issues with pills. My son is now taking pills but 12 mgs a day but doing better than shot. My son is still improving so if its just been a couple of months, its not long enough and he probably needs more, 117 is only 6 mgs per day. Or keep an eye on the last week vs 1st week of shot. Will your doc give you samples? if so get 3 mgs supplement the shot and then you will know if he does better, he needs 3 mg more in shot. Also, its harder to get the right dose in shot because its for 30 days. I prefer to supplement with pills first, because its just for the day.
My son was on Invega pills than shots for a few months but he kept having episodes every 3 days extremely delusional ,voices, confused, extreme anxiety and mostly suicidal thoughts for hours so doctor did not want to keep him on that medication. He cannot take several medication because he gets these kind of episodes. I used to log it everytime he had these episodes they would come on for hours and then he would be ok after the episode for a few days. Sometimes on meds I notice if my son would get stressed or nervous his symptoms would come on for a few min. and he would just have to rest and relax and then he would feel better .
Sorry Mortimer, but the atypical intramuscular AP injectables were designed for patients who have difficulty maintaining med compliance. They are not used as tranq’s like 1st gen APs such as Haldol or Thorzine.
There has been a greater movement within the last 5 years to develop more injectable atypicals. We now have Ability, Invega, Risperdal and Zyprexa as injectables, used to treat non-compliant patients–not to subdue them.
My brother is on injectable Risperdal because as he said, they could just look at him and tell he wasn’t going to take any pills they gave him. So he has to do it by injection. Nothing to do with sedation, everything to do with attitude.
I do understand, he enjoys being manic. It feels great to him to have that much energy. But it’s this past 18 months of agitated dysphoric mania mixed with a drug problem that made him violent and angry.
Wow, drugs, violence, and anger are a dangerous mix. I’m glad he’s finally receiving the help he needs. And he’s on a great med. It should stabilize his mania and let him see it for what it really is–a symptom that has to be treated.
I’ve been manic before and I enjoyed it too. I had TONS of energy. So I would stay up all night and make jewelry out of metal and found objects. I thought it was a great time in my life. Until it came crashing down into psychosis.
It was a shock to me, once I was medicated, that my huge surplus of energy was gone. That was one of the hardest side effects of treatment for me to accept and deal with.
But I came to realize that, although I felt great while manic, I was leading a very unhealthy life. I hope your brother soon reaches that realization too.
Hopefully, if possible, an increase to 156 mg will do the trick. If you have seen him do better on the higher dose then I think following your gut on this would make sense.
@rsummwwjd thanks for pointing all that out. I never broke it down into daily mg like that, but makes sense that he could supplement with one pill each day until we get it figured out. We can already tell that not only is the injection not strong enough, it does not last the full 4 weeks either. I managed to get an appt this Wednesday with his pdoc, can’t come soon enough, symptoms are even worse today. He’s very delusional.
Now I just have to get son on board. We are going out for lunch today and I’m going to try my best to explain everything to him in a way that won’t turn him off.
While discussing the pill supplement issue during our lunch date, son was adamant he was NOT going to take any pills. Said he just does not like them, they bother his stomach, hurt his organs, etc. I was disappointed in that but I could not change his mind.
Fast forward to pdoc appt the next day. Somehow pdoc got him to agree to the 3mg Invega Paliperidone time release pill supplement and gave him a 7-day sample. So this is the 2nd day taking the pill and I can tell he is doing better. He even came down the hall today doing his silly, goofy dance backwards all the way to my bedroom with his mischievous little grin, lol.
Also, pdoc will not prescribe son any more Adderall or Vyvanse, says it was probably making his psychosis worse, which I completely agree and I’m glad he is taking that stance.
In lieu of these two meds, pdoc is prescribing something new for his ADHD, Vayarin. It is described as “a prescription medical food for the clinical dietary management of certain lipid imbalances associated with ADHD. A unique composition of Vayarin is Lipirinen, a proprietary composition containing phosphatidylserine-omega 3, EPA enriched.” I’ve never heard of this, neither has our pharmacist. He had to order it and will be available today. It has to build up in his system and may take 2-3 months to reach full effects. No side effects btw.
Pdoc is also increasing the mg’s for Invega Sustenna injection from 117 to 156.
Yay, that is a good difference. These meds aren’t easy. Sounds like you have a good doc, cuz you have to play around with that dose, when first starting. Most hospitals start them out at too much, its much safer to start out less then go up. My son has always been non compliant, but I’m pretty sure some of it was caused by the wrong med, and over the top dosing when he started a new one. They certainly have an easier time taking it if its the right med and the dose. I’m very glad for you and your son. Yes they took my son off of the stimulant adhd meds and gave him straterra, non stimulant. And yes i’m glad also. I knew he was causing an episode with a stimulant, and he also misses his mania, but was going to die. I am going to check into the new med, don’t know if medicaid will cover it. ?? So glad when something works.
I’m so glad that you got to see your son being himself and silly.
I will have to look up Vayarin. Although I can’t even get my son to take regular omega-3 but just in case, in the future, he changes his mind would be good to have some info on it.
