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Invega Sustenna Questions


#1

Recently, someone here posted that they were told their daughter (I think), might have to be on Invega pills along with the shot for as long as 3 months.

I had read elsewhere that they only need to take the pills for a few days to make sure it works, then continue for a few more days until the shots are available to the body, but they did give my son a script for 3 mg/twice a day for a month.

He won’t take them.

He saw his regular case manager today & she said the shots would work, but it would take longer without taking the pills too. Although he seems much better to me, she said he should be better than he is. I’m very happy that I have someone who’s going to be aggressive with his improvement and not willing to settle for just OK, but his social anxiety baseline is pretty high even when not psychotic.

I understand her point, but short of force feeding them or hiding them in something he will take, he’s not going to take them. He even agreed to take one when he got home today, took it from me, put it in his mouth like he was taking it, then I found it on the counter.

Can anyone tell me how they saw things progress with the shots alone?

He had his starter shot a week ago today, then the 2nd shot on Friday, and he’ll get his third shot on January 6.

(He scared me today - before he went into his appt, he said he wasn’t going to take it anymore. I don’t know what she said to him, but he came back saying he’d take the next one because he was still “trying it out”. I really, really need them to get his disability approved so I can get him in this intensive treatment program that will only take Medicaid so that someone can keep working with him on that.)


#2

You need the pills for the first 30 days with the shot in order for it to be fully effective based on what my fiancé’s doctor told me when he was in the hospital.


#3

Thank you for that.

I’m not sure what part of non-compliant they didn’t understand, but he won’t take it.
He is back to wanting to take his Neurontin and they did give him a script for that.

Maybe I’ll go back to hiding it in his tablets just to get it in him for the month. I hate doing that, but I’m at the point that I just do what I have to do.


#4

I had horrific akathesia with invega, Latuda works well for me. I won’t take invega either, don’t blame him.

Sz admin has a consumer reports PDF document that lists all th AP options. Don’t hide the drugs in his food, that’s a common paranoid delusion of Sz, it violates his rights, and is distrust you for eternity whether my illness was in remission or not.


#5

You should do that. I’ve gotten to the point that I’ll literally just do whatever for him to take the medications. I can’t stand having another court order appearance or hospitalization. I’m taking him to an appointment this week, so we’ll see how that goes.


#6

Everyone’s different - other than a little soreness on his arm, he has 0 side effects with Invega.
He has a bag full of Latuda. He wouldn’t take it.

I don’t hide his meds in his food. I never said I did that.


#7

#8

Hi SLW,
First, I honor you and all family members who are walking this path of assisting our loved ones to recover from this illness. I say recover, because my son’s psychiatrist told me my son’s brain is healing and that it takes time, and I believe in this is true, while at the same time, this is a lifelong illness that will always need to be treated medically. As well as the fact that this illness brings so many changes that need to be addressed, for this healing to occur.

From the beginning, my son just had monthly Invega shots, without pills, as he was very against the pills, having had negative reactions from them. His doctor acquiesced. My son started getting better right away and continually improved, over time. It has been years, and he is still improving. (He is now on the quarterly injections, which my son chose, when he was offered the choice of continuing with monthly or trying the quarterly.) He is doing so well that no one can tell he has this illness, when they meet him. He is peaceful and happy. He has a deep spirituality, connection to nature, and respect for all life. He still lives with me and our two cats, in a studio in the large private back yard of the house I rent (minus a stove, as I don’t think he’s ready for that, yet; but that will come). This is far different than the way he was at the beginning, when he did not recognize anyone and thought everyone were aliens, when he tried to swim 40 miles to an island, when he lived in bushes near the beach and was starving, when he twice had to be hospitalized for a year.

I have seen a truly wonderful therapist myself, though all of this, so I have someone to help me to know all I can do to help my son. He told me it is important that my son feel safe and welcome, for the healing of his psyche to occur, and it has been and still is a top priority to maintain that environment for him.

I choose to respect my son’s wishes, when he feels strongly about something, as long as he is getting his injections and improving. To me, it is important to not only get his head clear with meds, so his brain can heal, but also to help him feel safe, heard, and respected. I have been working on building trust with my son, from the beginning of this, as I read and believe to be true that he needs someone he can trust, so that person can help him when he doesn’t understand. This has worked very well, and been extremely beneficial.

An example of how this has benefited him is that recently, we were forced to relocate away from the area we had lived for so long, far inland and to the desert area, away from the ocean he loves so well, because the rents had skyrocketed in our area. One of his delusions was that he would die if he left the ocean area, and he at first flatly refused to leave, saying he would camp out. This went on for a month, and we only had two months notice. I knew his camping out would not work and was terrified for him. I found our wonderful house in a small town that we could afford, which is in the desert. I showed him photos of the house, the yard, and his studio, and asked him to trust me, that I would make sure it was a good place for him, and that I would take him back to visit the ocean regularly. He agreed to come, and he is happy here. (Actually it is even better for him here, and his healing has accelerated.) He was able to let go of that delusion, and take a step that he could not have, before. This happened as a direct result of the deep trust I have worked on building with him.

With very best wishes,
ILoveMySon


#9

What a heart warming post :yellow_heart: this has actually helped me understand my own situation better and know its all gonna be allright. Take care x


#10

Jane57, I am so gladdened to “hear” that. It warms my heart when what I share from our life experiences bring emotional comfort and or information assistance.

I realized early on that everything we learn through this experience is not just for me and my son. You and I and all of us are pioneers, of a sort, because the field of treating mental illness has made such great strides, and we are among the first generation of families of loved ones with mental illness who are working with all the new resources available - and learning all along the way - to bring about a much more positive outcome than was previously available.

Warmly,
ILoveMySon


#11

I agree - that was a very comforting and encouraging post.
Thank you so much - it makes me feel much better about how things are going.


#12

SLW, I am so very glad.
Warmly,
ILoveMySon


#13

My son seems to be doing better every day in all areas except for 1 - social isolation/anxiety.

I know it’s early, but has anyone seen improvements in that area with Invega?

For him, general anxiety & social anxiety never seem to go away - it was there before any psychosis, and he says nothing really does much for it. It’s the main reason he wants to drink & do drugs - just to go numb for a little bit.


#14

Slw, in my son’s case, I think the anxiety might be here to stay but to differing levels. As soon as the meds begin to work and the voices slow down, he is uncomfortable. I don’t think I heard one complaint from my son from the shot, he just didn’t want to take it any longer. I wish he had stayed on it long enough to answer that question. I think it is awesome that your son is accepting treatment and I hope it continues. It sounds like he has a great team and mom who loves him dearly.


#15

We’ll see how accepting he is. He still gets mad if I mention meds, or talk about it too much if he brings it up.

When we went for his followup with his case manager after getting out of the hospital, he told me the shot did nothing for him, he didn’t need it and he wasn’t going to take it.

When he came out, she walked out with him (I had left her a message about what he said that she heard before she brought him back), and he said he was trying it out and would get the next shot.

Other than insight into the anxiety, he has not indicated that he realizes he was psychotic in any way, and it’s too early for me to start asking. The last time he gave a reason for being in the hospital it was because he was arrested for wanting a hug.


#16

This brings me so much peace. It’s nice to read. My son has been on Invega Sustenna since May. We’re adjusting the dose down next month from 156 to 117. Can I ask what dosage your son takes (I know he’s on three-months, but the equivalent to…)? I’m very nervous about going down but his side effects are strong enough that I think we should try it. Also, do you like the Invega Trinza? I’m anxious about eventually transitioning to the three-month, but it will be great if it’s a good move. My son has no psychosis on this medication but he has NO motivation and is very socially awkward, to say the least. I’m thinking about eventually trying to get him to try Wellbutrin but I’ve heard mixed things about it. Any information you can offer is greatly appreciated! Happy New Year!


#17

Hi JulieAnn, I understand that you want to help your son with negative symptoms. Wellbutrin can contribute to positive symptoms of psychosis, for example actually increasing delusions in some people. Found this out the hard way.

I think some people with psychosis-spectrum disorders might be alright on Wellbutrin or other antidepressants; just try to get a baseline for your son’s delusions in order to make sure an anti-depressant does not increase them.

Maybe bringing the Invega dose down will help with motivation? Is that the general idea?


#18

Oh, wow, thanks for that. I sure don’t want the delusions to start back up. He’s doing so well in that area. I’m glad you told me. Yes, I’m worried about his motivation. He has so many things he talks about doing (and all within the realm of reality, thank God!) but he can’t do any of them. He doesn’t seem depressed. He’s just very unmotivated and alone with no friends (social part is awful). Okay, good to know. I think we’ll give reducing the dose of Invega Sustenna a few months and see if things get better. Again, thank you for the info! I learn so much from all of you!


#19

Also, please take with a grain of salt, so to speak, as not all people will experience the same side effects of medication.

I hope something works for the negative symptoms.


#20

Yes, I understand. It’s still really good to know that this happens. I think making one med change at a time is enough. Who knows, maybe lowering the Invega Sustenna will work a bit. My fear is trying something new and having things go from pretty good to bad. I should be happy with the pretty good but can’t seem to stop wanting him better and better. Thanks again.