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Coming off Invega Sustenna (paliperidone)

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Narshe81

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I have never heard of the term anhedonia or knew as much about neuroleptic drugs as I do now until this all fell upon me. I do agree there might be some extreme cases where neuroleptics do benefit the patient as a whole, but those have to be really extreme cases where life and death is at stake.

Now all I do all day every day is researching this stuff and it has consumed my life. I don't care about anything else or do I do much aside from reading up on my condition. The fact that there is so little known yet about Invega Sustenna since it is rather new is making me really worried. I do understand that it is similar to Risperidone and that Risperidone has been around for ages, but that doesn't really help my case much.

I used to have hope of recovering until I ran into some posts about people who are still suffering from side effects from neuroleptics after years of discontinuing. Those posts were like death sentences for me. The only reason why I still haven't really freaked out about all this yet is because I have yet to reach the expected elimination time of this drug which is 4-8 months. I am really counting on that. I did find a poster from this forum who was given Invega Sustenna and took one year to recover, but he only had 2 shots of it whereas I had 10.

To be honest I am still skeptical about the whole psychiatry business now, but I hope to be wrong. I have never wanted to be proven wrong as much as I do now in my life. I want to believe that I can recover.
 

paranoid android

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If Invega sustenna was going to have any horrible side effects Risperdal Consta would have already have had those freaky weird side effects your so worried about. Risperidone metabolizes into Paliperidone which means that when it passes through your liver you are experiencing the effects of Paliperidone.

As for those meds i pointed out mood stabilizers and anti-manic drugs are the first choice in treating bipolar disorder long term though some anti-psychotics are now being used for that purpose. For schizophrenia they are the first choice of treatment naturally as they are anti-psychotics. In many cases it comes down to take your meds or spend your days so fucked up from schizophrenia that you can't function or go in and out of psychiatric hospitals because you just can't look after yourself. Before chlorpromazine was invented many patients where locked away for life in psych hospitals that where no better then prisons. Not to mention the actual crimes committed against these people like lobotomies and ECT. It was when chlorpromazine was discovered that people who had previously been seen as hopeless cases where able to live productive lives.

As for anhedonia i have never experienced medication induced anhedonia. Anytime i have experienced it it was depression related.
 
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AFOAF Chemist

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Just like to add my gf is on invega sustena 350mg. It has literally fried her brain. She has difficulty talking and performing every day tasks. She thinks people mutter under their breath about her and is always thinking people are conspiring against her. She believes some people are possessed by demons and constantly thinks everyone is plotting against her. She is quite frankly a bitch to live with but I do love her. I believe she is schitso-effective. It if not the medication has made her this way

I only hope her doctor can find something more effective
 

Narshe81

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Just like to add my gf is on invega sustena 350mg. It has literally fried her brain. She has difficulty talking and performing every day tasks. She thinks people mutter under their breath about her and is always thinking people are conspiring against her. She believes some people are possessed by demons and constantly thinks everyone is plotting against her. She is quite frankly a bitch to live with but I do love her. I believe she is schitso-effective. It if not the medication has made her this way

I only hope her doctor can find something more effective

I'm sorry to hear that your gf has to go through this. Yes, the first couple weeks after having started Invega Sustenna I was just like that. Had trouble speaking and was unable to clearly formulate a thought that lasts until now. I believe I have been completely destroyed by those injections and am trying my hardest to recover. I have a long list of side effects from this drug and regret every single day that I had to take those injections.

I am not a doctor, but her symptoms are similar to what I was going through when I had weed induced psychosis. How long has she been on it and how long must she stay on it for? 350mg is a pretty high dose so maybe that is just a loading dose to start her off with the Invega Sustenna program. They will give you a huge dose first, then another loading dose 2 or so weeks later, then from there on it will be once a month.

I wish you guys the best in finding what works best for you.
 

Narshe81

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An interesting recover experience

I found a very interesting respond to my post from another forum and I thought I would like to share it here. This would be very informative for anyone who wants to come off Invega Sustenna.


Here is the post:


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?
 

AFOAF Chemist

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That worries me. Like I said my gf takes a 300mg shot every month for the last 4 years. Pretty much everything you guys report she goes through but worse... She can hardly form complete sentences sometimes.

I generally have to make any big decision for her and keep track of all her appointments and money.

While most people can't remember what they had for breakfast two days ago... She can't remember what she had for lunch 2 minutes ago

And not to toot my own horn... Har har, but I've been in previously sexual active relationships with, let's just say no complaints, and now with her even after a good.... Shall we call it a two hour romantic encounter - she recieves no pleasure in it.

IMO invega is the worst drug anyone could be put on for any reason. If your on it please discuss alternative medications with your doctor.

And as far as invega being the same as risperdol, yes in a way they are.

However it would be like comparing moonshine to a beer. Sure they both have alchol in them... But the effects are entirely different.
 
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ad lib

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Although I have no personal experience with this drug, it sounds absolutely terrible. Why is it still around if it's so terrible? It's quite sad.
 

Narshe81

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It has been more than 4 months now since my last injection. I still feel the same as I did when I was still on the injections. I haven't felt any improvement at all.

The only feelings I have anymore are anger and sadness. Anger because they have misdiagnosed me and forced me to take this horrid drug for 10 months. Sadness from the fact that I am no longer a human being. My body is alive but I am not alive. I feel like my life was over since last year.

Who will take responsibility for this? What can I do? I am so hopeless and scared.
 

beagleboy

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http://en.wikipedia.org/wiki/Thomas_Szasz

is a permenant Psychiatrist in NY and is very vocal about the harms of psychiatry. I think the link might have some phone people that you can contact about what the next step should be in getting off dangerous drugs.

I took that same med for 3 months tapering each month, and had to invite an adult at my apt for when they showed up the next time to sway them that I meant business.

Their whole speal that Schizophrenia is real is the MRI/autopsy of a relative pointing to you have a genetic disease.

Each psych ward/group home that Ive dealt with are absolute DRUG DENS and not much more.
 
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pubiccubic

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Hi Narshe I am on the exactly same boat as you.

I was forced to take Invega sustenna for 6 months on a CTO for cannbis induced psychosis, Since then i have also have experienced everything you said, Emotional Numbness, Lack of spirit motivation, Fatique, Anhedonia, constipation. Anyone who tells me that this is not caused by the medication can go fuck themselves. I have read That The Dosage at 75 mgs at the has a half life of 29-31 days, Whilst 100mgs is 34-36 days. Takes 4-6 months for it to be out of the system, but you probably already know this. I am sure the cause of these side effects are the result of the lack of dopamine due to the receptors being locked down. A lack of dopamine effects Motivation, Pleasure Reward Systems, fatique, creativity, Dominance personality, sleeplessness and many more.

Don't give up hope yet my friend you are almost there !!! I envy your progress even though it has been hell. Dont worry my friend you are almost there !!! Look forward to the day when your head pops open and a sudden rush of energy flows into you, Thats what i heard anyway.

Have you tried weed recently ? if so how has your experience been, I am a bit scared to trying weed due to psychosis but i want to go back to do it.

Until then my friend, Good luck with the progress, Just do everything you can to take your mind off it.w
 

revv

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Pubiccubic how do you know it was cannabis induced psychosis?

I also smoked pot heavily from 19 to 23 years old im 24 now and was hospitaziled when I was 23
 

pubiccubic

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I had my first episode after 2 n 1/2 year of smoking pot, i was on antipsychotics on and off for about 2 months and stopped all together for 7 months without anymore delusions, though i might have heard voices, its hard to tell because it mimics everything else and sometimes whispers. After the 7 months i went back into smoking pot for about 3 months which led into another episode of delusions where i was put on a cto for breaking my TV.

Though there is cause and corelation issue here i believe if i hadnt smoked pot i would have had the second episode, thats why i believe its a drug induced psychosis. Doctors said something about schizophrenia drug induced as diagnosis
 

sam05

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ive been through the whole trying of different drugs to treat my drug induced psychosis (permanent schizophrenia diagnosis) and the only pills that treated my condition effectively was risperidone. ive been on it ever since i had that episode and i'm able to function, i dont have any delusions or hear voices or anything like that (i never did, i just felt kind of spaced out and kind of like i was high, but different) apparently i just suffer the negative symptoms of schizophrenia. never had any bad side effects from these anti-psychotics except i sleep 12 hours EVERY day and when i wake up it takes me an hour, 2 strong coffees and about 4 cigarettes to wake up and not feel like im about to collapse from being so tired.
 

pubiccubic

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Hi sam
I also have the same feeling in the morning, im always overly tired for some reason, i can easily sleep 11 hours and nap during the day. How did you get diagnosed schizophrenic when you dont have delusions or hearing voices, i dont understand. Negative symptoms could just be symptoms of depression
 

sam05

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well at first i was diagnosed bi polar because i was crying hysterically in the doctors surgery, i was then referred to a mental health place that deals with mental illness in youth. this was in beginning of 2008, i went there and they questioned me, i said what was true which was i had disorganized thought processes and i had been smoking weed pretty heavily for a couple years before my first episode happened. i just told that what i was experiencing which was psychosis and was put on meds, i saw this person which is called a case worker or psychologist every week for about 6 months, i was then too old to be seeing her and was referred to a different place. next place i went to i had to see a psychiatrist and also some other guy that set out goals and stuff.

anyway, im not too sure how the diagnosis came about but it is right, if i dont take the meds i cant function, i have tried anti depressants and they dont work for me, i have just accepted that this is how my life is gonna be i guess.
 

paranoid android

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Risperdal never made me sleepy but it did make me feel zombiesh at doses of 2mg's+ if i wasn't manic. I was on it for years at 2mg's a day or more cause my insurance only covers risperdal, seroquel or the typical anti-psychotics. Zyprexa works the best for me but it costs a fortune so i can't afford it. Risperdal worked but only with a mood stabilizer. I took it with just anti-depressants and it didn't help much. It does nothing for the depression side of bipolar either unlike seroquel or zyprexa. I even find to have Thorazine aka good ol Largactil to have better anti-depressant properties.

As much as these meds can suck without them i would be in a institution for sure. I'll take psych meds over that anyday.
 

sam05

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im on 3mg riserdal + 3mg invega taken at night. another side effect i get is sweaty hands all the time, i have to keep washing my hands. ive tried seroquel and it made me sleep within 5 minutes of taken it, also tried zyprexa which made me hungry and eating constantly, solian (Amisulpride) which gave me alot of energy but not focused energy kind of scattered, Abilify same as solian kind of scattered energy plus restless legs and probably some others i cant remember the names of.
 

Roasted

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Hi guys, I pretty much signed up to reply to this thread. I've been on risperidone for the past year after a severe manic episode that was kick started by Cannabis use, more specifically hash. The doctors think it was Cannabis induced psychosis. I haven't touched weed since and I didn't have any further episodes however I feel pretty much how you guys are describing. Slow, unmotivated, and generally miserable. I've already went down to 1mg a day from 3mg and although I felt better going down I still feel like shit. I'm supposed to get off this junk in a couple months and I'm hoping my situation improves. In the meantime I go to work, go home, and do nothing all day. Getting up every day is a struggle and I often don't even shower for 2-3 days at a time. Life is hell. :(
 
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