Nothing is worse than Invega Sustenna

[Narshe81]

I figured it is time for me to start my own thread. I was misdiagnosed with schizophrenia last year after having been given Invega Sustenna at 100 mg a month for 10 months. The medication gave me severe anhedonia where I can no longer feel pleasure or joy from anything. I have lost my motivation and willpower to function in life and have lost my job and been on disability ever since. I then learned the horrible facts that Invega Sustenna has a ridiculously long half life of 25-49 days, has effects up to 126 days, and that it can last up to 4-8 months in your body before it is cleared.

 

I have read that it takes on average 3-4 months after stopping the oral form of antipsychotics for most people to start feeling better. Does this mean that I will have to wait for over a year after stopping Invega Sustenna to start feeling better?

 

I have been desperately trying to find more people who were on Invega Sustenna but I could not find any success story about anyone coming off it at all. Apparently the drug is really new and just came out in 2009 or 2010? Has anyone ever taken it and successfully came off it? How long did it take?

 

My last shot was on August 29 2013. It's been almost 3 months and I have yet to feel any improvement. 

Edited November 24, 2013 by Narshe81

[jt07]

The medication gave me severe anhedonia where I can no longer feel pleasure or joy from anything. I have lost my motivation and willpower to function in life and have lost my job and been on disability ever since. 

Are you absolutely sure that these are not negative symptoms? You say that you were misdiagnosed with schizophrenia so what is your current diagnosis now? Why were you diagnosed with schizophrenia? Did a doctor tell you that you were misdiagnosed? 

Edited November 24, 2013 by jt07

[Guest]

Typically, they don't give Invega sustenna unless you have not been compliant in taking your meds or you're very likely to not take them. I guess since you quit in August, that might very well have been a valid concern. Did you quit with the agreement of your pdoc? Or did you stop on your own? 

[Narshe81]

I quitted with the agreement of my doctor. He now thinks it may have just been weed induced psychosis and will give me a second opinion in three weeks.  I am also pretty sure it's all the effects from the medication since they all came a week or so right after I started Invega Sustenna.

 

Why do they have to give this injection once a month when the medication has a 49 days half life and can stay in your body for up to 300 days? I am extremely upset that I will have to be stuck with this feeling for God knows how long. I seriously have not found any successful story of anyone coming off this drug and I am really scared.

[jt07]

I am also pretty sure it's all the effects from the medication since they all came a week or so right after I started Invega Sustenna.

But that also coincides with the psychosis. I'm not saying that these meds do not cause flattening in some people, but what you are describing is dramatically more than flattening and also describes negative symptoms. What does your psychiatrist say about this? Does he believe that it is the Invega?

I have taken Invega in pill form, and I never had any such problems. It was a good med. It upsets me when I see a potentially helpful med being demonized.

Edited November 24, 2013 by jt07

[Narshe81]

Yes, I am sure it's the med. I have a friend who I met at the hospital who has also been on Invega Sustenna and he is suffering from same symptoms. I also found a few others online who were on this medication and all of them suffer from what I have and more. Some developed breasts, some got serious movement disorders, etc. They said I was lucky to just get anhedonia, but to me it is hell nonetheless. 

 

I am glad that the pills are working well for you. I guess it's just not for everyone because I cannot imagine living like this forever. I'd rather die. I am scared to death that this will be permanent but I still have to wait almost a year more to see if I got better. This med has a really long half life of 49 days. 

 

I really wish I could describe in words how I am feeling but I can't. It is the worst feeling. Total hopelessness and despair and constant feeling of dysphoria. Nothing I do changes how I feel. I feel like I have lost my soul.

[Guest]

I looked up the half life info "The median apparent half-life of paliperidone following INVEGA® SUSTENNA® single-dose administration over the dose range of 39 mg - 234 mg ranged from 25 days - 49 days."

 

Talk to your pdoc. See what he says. I'm inclined to agree with jt07 that it sounds more like symptoms rather than side effects. 

 

All the APs can cause side effects. Mostly, you hear people complaining because the people that it's working for are off living their lives. Those of us that have a tougher time with meds tend to meet when looking for support. 

[Hadeharia]

I'm sorry that you're going through this. Invega Sustenna can be a great medication for some people, but I know from personal experience that it can be absolutely horrible for others.

 

I hope that you start feeling better soon. This isn't going to last forever even if it feels like it will.

Edited November 24, 2013 by Hadeharia

[Narshe81]

I will talk to my doc again when I see him on Dec 11. Thank you for all of your replies and I will keep you posted after Dec 11th 2013.

[hagar]

I'm really sorry you've had such a horrible experience. I hope your doctor can think of something to help you when you see him again. 

 

Did you take the oral Invega before the injections? It's recommended to take those first so if any unbearable side-effects emerge, it won't be anywhere near as long of a wait for it to clear your system. I've been on varying dosages of the oral Invega for a few years now, and my old psych nurse was really pushing the Sustenna on me and to this day I don't know why. I was always 100% compliant. Maybe she didn't believe me because I was still having major symptoms, but regardless I just couldn't bring myself to take the injection. 

[natatatt]

Hey so you doctor's appointment is coming up soon. Any improvement?

[Narshe81]

Hey so you doctor's appointment is coming up soon. Any improvement?

 

Hi,

 

Still not even a bit of improvement. The side effects are still as strong as they were when I was still getting the injections. Have really been losing hope.

 

My doctor's appointment is tomorrow. I will tell him everything and see what he can do for me. I will also ask him straight forward questions about when I should expect to recover and hear what he will say.

[jt07]

 

Hey so you doctor's appointment is coming up soon. Any improvement?

 

Hi,

 

Still not even a bit of improvement. The side effects are still as strong as they were when I was still getting the injections. Have really been losing hope.

 

My doctor's appointment is tomorrow. I will tell him everything and see what he can do for me. I will also ask him straight forward questions about when I should expect to recover and hear what he will say.

 

 

Good. Keep us updated, please.

[natatatt]

Good luck today, let us know how it goes. I hope they get this all sorted out for you soon. 

[Narshe81]

Well, I just got back from my doctor's appointment.

 

I'm not sure if it went well or not. As soon as I got there my doctor asked me how I was feeling. I explained to him in details how I am feeling and how I have not felt any improvement yet. I then asked him that if it is because Invega Sustenna has such a long half life that is why I haven't felt any better. He said no. I then brought up how I have been reading online and explained to him about the cases that I have found where people still experience anhedonia after stopping antipsychotics. He then said that my being anhedonic is because my psychosis was probably induced by weed, and that it is common post weed psychosis to have anhedonia.

 

I asked if antipsychotics could cause permanent brain damage. He said no again. I then said to him that antipsychotic drugs can cause things like tardive dyskinesia which is permanent. I asked him if that proves that antipsychotics can in fact cause some permanent brain damages. He said no and that I was reading up too much junk.

 

He then brought out my files and began to go through them. He began to ask questions about my past hospital visits since I was young. He said that the record shows that I was abused as a child which prompted him to believe that I may be in fact experiencing a form of PTSD and mood disorder. After having said that, he made an appointment for me to see a mood disorder specialist on the 24th coming up.

 

I told him about cigarettes, alcohol, and other substances that used to give me pleasure all have stopped working. He asked me what I meant by stopping working and could not give me a straigth answer. He just brushed it off and then reaffirmed me that this could be PTSD and mood disorder. He said that I will just get better and better.

 

So that was my appointment with my doctor today. At the end he then prescribed me some more mirtazapine and sent me home. A good thing about this appointment though is that today they have canceled my CTO (Community Treatment Order). This means that cops will no longer come and drag me to the hospital if I refuse my medications or fail to show up for appointments. I really don't know what to make out of it all, but there's really nothing that I can do aside from waiting to meet with the specialist on Christmas Eve.

Edited December 12, 2013 by Narshe81

[jt07]

I'm glad that you are going to see a mood specialist. Please take the mirtazapine as your pdoc has prescribed. It really is not all that bad of a med. Other than sedation and appetite increase, it doesn't really have any bad side effects, and sometimes these side effects resolve (at least the daytime sedation resolved for me). It is also easy to get off of when that time comes and not anything like the withdrawal from SSRIs.

 

Anyway, good luck with the mood specialist. Thanks for the update!

Edited December 12, 2013 by jt07

[Narshe81]

I took 30mg of Mirtazapine last night. It totally knocked me out and I actually had a really good sleep. I think I will keep taking it.

[jt07]

That's great! Yeah, it can really knock you on your ass. But if you have any daytime sedation, it should go away after a week or so. I like it because it doesn't space me out like the tricyclics or blunt my emotions like the SSRIs.

[WinterRosie]

Yay! Sleep is really important.

[Wonderful.Cheese]

I am glad that you get to see a specialist. And congrats on getting your CTO done. I've had them before too. Not exactly a good time having cops show up at your door.

And good too about the good night's sleep. That always helps me out too.

[Narshe81]

Thanks guys

 

Yeah, I will continue to take mirtazapine. I think I will try to be a bit more cooperative with my doctor. I will update you guys after I see my specialist.

 

 

Cheers and good luck on all of your recoveries!

 

 

Also I wanted to add something. I did find an interesting study I thought I might share:

 

By Harrow, Martin; Yonan, Cynthia A.; Sands, James R.; Marengo, Joanne

Schizophrenia Bulletin, Vol 20(2), 1994, 327-338.

Abstract

Investigated the presence of a full depressive syndrome in schizophrenia years after theacute phase and factors linked to these depressive syndromes. 75 schizophrenia and schizoaffective patients and 32 patients with bipolar affective disorders were studied prospectively at index hospitalization and followed up 4.5 yrs later as part of the Chicago Followup Study. All Ss were aged 17–30 yrs. Over 30% of the schizophrenia patients showed full depressive syndromes during the followup year. Schizophrenia patients on neuroleptics were significantly more likely to show full depressive syndromes than those not on neuroleptics. This relationship held after the level of posthospital psychosis was controlled. Data suggest that neuroleptic use is 1 factor linked to the depressive-like syndromes found in the posthospital phase in nonchronic schizophrenia samples. The data indicate a strong link between neuroleptic use and anhedonia. (PsycINFO Database Record © 2013 APA, all rights reserved)

Edited December 13, 2013 by Narshe81

[Puddles2009]

I can totally relate to this i am at 9mg currently and i was getting bad symptoms

 

Dizzyness
Dry mouth
Excess saliva (yes both at different times of the day)
Headaches that come and go
Weight gain in huge amounts 15% increase in a month total
I get bad reactions to sunlight, literally heatstroke within 10 minutes in 40 degree heat almost borderline hospital case.

At 6 mg i got very few of these side effects only got the 

Dizzyness
Headaches come and go
Weight gain in lower amounts 

 

My aim is to drop to 3mg a day on this med

Edited December 13, 2013 by Puddles2009

[Narshe81]

I can totally relate to this i am at 9mg currently and i was getting bad symptoms

 

Dizzyness

Dry mouth

Excess saliva (yes both at different times of the day)

Headaches that come and go

Weight gain in huge amounts 15% increase in a month total

I get bad reactions to sunlight, literally heatstroke within 10 minutes in 40 degree heat almost borderline hospital case.

At 6 mg i got very few of these side effects only got the 

Dizzyness

Headaches come and go

Weight gain in lower amounts 

 

My aim is to drop to 3mg a day on this med

 

Hey,

 

Sorry to see that you are also going through a tough time with this med. On the birghter side of things though you are on the pills instead of getting the LAI injections. This means it will be easier for you to come off it or switch to other meds. The half life for Invega pills is 23 hours whereas the injections is 49 days. Big difference.

 

Good luck. I hope you can figure out what works best for you.

Edited December 14, 2013 by Narshe81

[Puddles2009]

So far 6mg is working with heat tolerance

[Narshe81]

I met my mood specialist for the first time today. We had a long talk and he asked me a whole bunch of questions. Ultimately he agreed with me and also believes that I am suffering from neuroleptic induced anhedonia. I mentioned to him that aside from helping me sleep a bit better, mirtazapine doesn't seem to help with anhedonia at all. He suggested me to try Effexor but I refused and explained to him that I would like to not rely on any more psychiatric drugs and informed him also that I am tapering off mirtazapine. Surprisingly enough, he agreed with me and decided to not push any medication on me. 

 

I will meet with him and my psychiatrist again in two weeks. Tomorrow is going to be the second Xmas I am spending with anhedonia...

 

 

Merry Xmas and thanks for reading.

[San]

Maybe if you stopped obsessing over anhedonia and moved on with your life, got therapy and worked through it, stopped blaming everyone but yourself, you'd see some improvement?

[Narshe81]

Maybe if you stopped obsessing over anhedonia and moved on with your life, got therapy and worked through it, stopped blaming everyone but yourself, you'd see some improvement?

 

I came to realize over time that it is impossible to try to get those who do not have anhedonia to understand. No words can truly express it. This will be my last post here for I do not think myself and others would benefit from my posting here anymore.

 

Before I leave I would like to leave this here. This is a reply to a post I have posted in other thread that I feel would benefit those who are suffering from Invega Sustenna.

 

 

 

Hi Narshe81 (and also jjasonn).  We're in a pretty similar boat in terms of experience, and I agree with most of what you're saying.

 

I had a psychotic episode last December, and in January 2013 I was given the normal starting routine for Invega Sustenna - 1 234mg shot (1/7/2013) followed 1 week later by a 156mg shot (1/14/2013).  This was the worst thing that has ever happened to me - bar nothing.  Not the episode!  That was bizarre, to be sure, and I'm worried about my medical condition....  but it's the drug that was so horrifying and destructive.  I was dying to find the same information you're seeking Narshe and jjasonn, earlier this year, and I still am.  All I can report is from my experience in the last 11 months and my research of the drug label and articles I could find online.  I have learned some things.  I never got another shot after 1/14/2013.  That was against the recommendation of my doctor.  We'll see how it turns out.  Taking this torture as a precautionary measure, when it's far far worse than delusions themselves?  That calculus didn't make sense to me.  I hope I'm right.  For one thing, it's absoultely clear that my doctor did not grasp the potency of this drug.

 

Here's the bottom line Narshe: it has been 11 months. I'm still messed up from the drug, but it has improved dramatically over time.  I would say I was devastated through July (6 months out), transitioned from devastated to "heavily impaired" from July to October (9 months out), and since November I've been "impaired" (11 months out).  I'm plenty messed up now, with cognitve issues, sexual function issues, anhedonia etc., but its nothing next to the hell I was in in February.  Each month I can notice significant improvement in my cognitive function, my mood, and emotional sensation ... my sexual interest and testicular function, twitching, weight gain (20 lbs), dizziness upon standing, restlessness, inability to think or focus or engage watching tv, listening to music or playing games; difficulty conversing, feeling pleasure and being generally in perpetual deep boredom, having no motivation at all.  My only experience with feelings as low as suicidal ones, in my entire life, was in January-February.  That has certainly passed.  Some of the effects in that incomplete list went away before others.  And I didn't feel that great or aware about my improvements each months until after about 6 months.  At the very beginning I was urinating every 30 minutes and couldn't move my face.  Most of the list was ongoing after two months.  Anyway, I didn't feel like I was appreciably improved until around September - so that's 8 months later before I personally felt any real hope of recovery.  I hope knowledge of that date helps you. This (11 months) is the first month where I feel I can "pass for normal" to an average person.  They might think I'm tired, but would never think I'm way off/drugged, even if they know me, actually.  I can still tell I'm messed up, of course.  But I can also tell that I've gotten a lot of abilities back.  It's very exciting actually.  I also lost the 20 lbs I gained from the drug through vigorous exercise from July to September. (recommended)  I still have many of the same feelings you have: I'm hoping I'll improve all the way, maybe 90% or something, maybe more.  And I'm very worried about the permanent effects.  I'm personally very focused on the cognitive effects, but I'm also wondering if my tongue will stop twitching when I stick it out and so on.  Thinking was the name of my game, 24/7, and it was just snatched away.  But I can tell you that you won't remain devastated forever; that it at least improves to "impaired".  And in 6 months maybe I'll be able to tell you that you'll improve all the way or almost all the way.  Also, DO NOT be discouraged by people telling you that you're exaggerating, that there is nothing wrong, or that they can't tell (which may be true); that your complaints are actually of the condition and not the drug, etc.  These people have no idea what they're talking about.  I have a supportive and attentive girlfriend, who was able to see many of the subtle things (to an outside observer) of which I complained.  That was very helpful to me. My father on the other hand, thinks this has all been exaggeration and a hypchondriac's prattle.  So I had to deal with that and it's tough.  The drug is devastating for real; don't be BSed out of knowing that.

 

My diagnosis was psychosis NOS (not otherwise specified).  That basically means I didn't get a "real" diagnosis cause they weren't sure what I had / had happened.  My psychosis consisted entirely of paranoid delusions and it lasted about 45 days - I had no hallucinations, no difficulty thinking (delusional belief formation aside), etc - I definitely had paranoid delusions though.  I also separately have depression and high anxiety.  I normally take no medications of any kind and I never do any drugs, including alcohol, with the sole exception that I sometimes smoke tobacco.  I'm a physicist with advanced degrees and I went to/ worked at some of the very top schools in the country.  That's diagnostically relevant, but I'm also hoping to get a cred. boost.  I'm 29 years old.  I still am trying to figure out what my underlying diagnosis is... bipolar perhaps?  I don't think I have schizophrenia, but I'm not certain.  Statistically, it would be a late onset.  I really just don't know, and neither did my doctor(s).  But I was told to continue taking antipsychotics just in case I was schizophrenic and I disregarded that advice.  I recovered "100%" from my psychotic delusions in late January, which I was told is rare.  So far I've had no recurrence of any psychotic symptoms.

 

As far as I could find, there is nothing that can be done to speed the removal of the drug from your body.  I suspect that obesity makes the drug last longer as it gets stored in fat, but that's a bit of a guess.  My intuition says drink a lot of water and exercise if you want to try and speed up the removal.  According to the label for Invega sustenna, enzyme CYP3A4 might be important for eliminating paliperidone.  It says that if you take an inducer of CYP3A4 you may need a higher dose for paliperidone to be effective.  It later claims that this result is contradicted by other studies, so its unclear.  You could try to induce that enzyme. Capsaicin is the only food I found online to induce that enzyme.  I never tried it, and I certainly didn't want to take another drug for this purpose, but I wouldnt mind spicy food.  Kind of an aside I guess, but it might be worth trying.  St. John's wort is a major inducer as well, but its a drug.

 

After the amount of time I've been off the drug (better put - since last injection), I'm not sure anymore if I'm still heavily drugged, or rather if my brain chemistry hasn't normalized (or if there is permanent and irreversible damage). A bit of both I expect (or all three).  But FYI the half life for a 234 mg dose is 49 days.  My dose was essentially 400mg in some sense.  Your dose (naively at least) is 100 mg plus what was left over before that; probably another 200 mg or so. So permanent damage from duration of use aside, we probably quit from similar dose amounts.  Since the half-life decreases with quantity, using 49 days should give you conservative estimates of the amount of palmitate left.  I remember finding 15mg to be the best conservative estimate of my equivalent oral daily dose at injection time.  SO, 2 months later, its about 7.5 mg/day and so on.  I'm not sure how useful or accurate this method is though because it doesn't align with my experience that well.  One thing to keep in mind is that 49 days is a median.  That means for some people they still had 85% after 49 days.  I found something a while back that had actual raw data and the variance was very high.  I personally set my expectation at double the median to be very conservative.  With the time of "brain recovery" though, I mean...  this is pretty much guess-work.  The main thing is the my personal "raw data" - which is that I know how I feel.  And you do get better over time.  I would be interested in getting a blood test to see how much drug is still in me (and how much prolactin), but I never did that.  You could consider that if you were very curious.  Another kind of raw data.

 

Anyway, I've learned a lot about paliperidone from obsessing about it online the past 11 months.  Bipolar patients can expect decreased cognitive funtion, including poor verbal recall, poor working memory, and slow processing speed.  Switching to abilify can reverse hyperprolactinemia, for anyone having sexual issues and wanting to stay on anti-psychotics.  That first tidbit points out that the underlying condition can have a big impact on your experience of paliperidone, since the drug apparently improves thinking for some schizophrenics.  This is already too long and I think it hits what you wanted to know already, so I'll end here. Hope this helps.  You just have to wait it out... for you know, maybe 18 months total?  It's a while.  Good luck.  And as far as permanent effects I'm in your boat completely.  Anyone out there have information about how things look past 11 months?

Edited December 29, 2013 by Narshe81

[kateislate]

Maybe if you stopped obsessing over anhedonia and moved on with your life, got therapy and worked through it, stopped blaming everyone but yourself, you'd see some improvement?

You know what - you could be obnoxious and say this about any MI - "move on!"

You have no idea what Narshe is going through, so until you've walked in their shoes just lay off the assholery.

[DanTheMan]

Maybe if you stopped obsessing over anhedonia and moved on with your life, got therapy and worked through it, stopped blaming everyone but yourself, you'd see some improvement?

You know what - you could be obnoxious and say this about any MI - "move on!"

You have no idea what Narshe is going through, so until you've walked in their shoes just lay off the assholery.

[DanTheMan]

agreed. Crazyboards for me is a place where i can say what the fuck i want. Narshe has gone through something very similar to my experience with risperidone. its an awful feeling. it feels permanent... it feels like the end. But it wasn't. i got better after quitting the risperidone. Narshe, you will get better too. don't stop posting because of assholes.

Edited December 30, 2013 by DanTheMan

[Sync]

I agree with kateislate and dantheman. I've heard almost that exact argument directed at me for my MI issues more times than I can count. His pdoc agrees with him about the cause of his anhedonia, and if his brain chemicals are messed up, he can't just make the problem go away through the magic of blaming himself (??) or pretending it's not there. 

 

I hope you feel better soon, Narshe.

[San]

This is a pro-meds and pro-treatment board.

 

I didn't simply say "get over it." I was saying "get treatment for it", rather than post the same thing over and over again.

And honestly, I've been through similar situations, and worse. Do you have any idea of my history? Probably not.

 

I've honestly had enough of this topic being repeated.