Coming Off Invega Sustenna

Updated

Hi,

I was given Invega Sustenna at 100mg a month for 10 months since Dec 5th. My last shot was on August 29th 2013.

The medication gave me severe anhedonia and I have lost the motivation and willpower to do anything. I can no longer experience joy, happiness, or pleasure from anything I do and I have no interest in doing anything. I constantly feel restless and uneasy and I just can't shake this feeling away no matter what. All of these started about a week after my first IV.

I have been off this medication for almost 3 months now and I have yet to feel any improvements. I have read that it has a long half life of 25-49 days and that it can stay in your body for 300 days. So does that mean I will have to wait a year to start feeling better?

Any info on someone who has been off this med would be greatly appreiciated. I am interested to learn how many months it takes to feel better after invega sustenna.

Thank you

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1

Hello, Narshe81! How are you doing?

The full elimination time from your body usually takes 5 to 6 half-lives, so that would range from 125 days to 294 days.

However, over that time period, more of the medication is gradually eliminated, so it likely will not take a year for you to start feeling better, but it could take several months.

Have you consulted your doctor for assistance?

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2

Hi,

Thank you very much for your response. I have told my doctor everything about how I felt and that was why he let me off the medication. I was diagnosed with schizophrenia last year and now my doctor thinks that it may have just been a cannabis induced psychosis.

This medication has ridiculously long half life. I have never felt this bad before and it really has been the worst form of torture I have ever been through. It is not even funny how difficult it is to get through a day feeling like this. And I have been feeling like this for almost a year now. I am really hoping that you are right that I will start feeling better in a couple of months and not a year.

I have been trying desperately to find a success story of anyone coming off invega sustenna but I have had no luck. The drug is rather new. I am so scared that this could be permanent though I know I might just be too pestimistic. But at the very moment, this feels permanent. It's horrible.

I have read many posts where people who were on the pills version of antipsychotic took about 3-4 months after their last pill to start feeling better. The pills usually have a half life of 24 hours and is cleared by 5-6 days. With invega sustenna having such a long half life I am scared that it will be 5-6 half lives PLUS 3-4 more months afterward. That's more than a year!!!

I really don't know what to do. I have never contemplated suicide as often as I have been after this medication. I want it all to end.

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3

I can't promise it will get better but I can say I'm right there with you. Today is 12/6 and my last and only shot was 10/30. I have the same effects - anhedonia, constant depression, restlessness (has worn away now), no pleasure or interest in anything. I'm glad to find I'm not alone but it's only been like a month for me and I only had one shot. I was never like this before so I'm pretty sure it's the drug

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4

You only had 1 shot of it? What was the reason and what was the dosage? Did you take any other antipsychotics before the shot?

It has been 3 months since my last shot and I still haven't felt any improvement. I am scared to death that I have been on this drug long enough for it to have caused permanent damage. I have yet to find a success story of anyone coming off this drug.

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5

I have been on invega sustenna for 8 months and was wondering when my anxiety and restlessness and suicidal thoughts where going to go away, and I am not talking another drug for the complaining of the drug, that is all psychiatrists know is to write another prescription for how you feel, I am on a community treatment program that says I have to get my IV for another 3 months but I am stopping it because I feel like crap, total crap, no energy or even feel good about anything, these are antipsychotic drugs and they are not ment to be taken when they make you feel bad. But the biggest problem is that there are only a few of these drugs and the doctors do not ask if you have been on the same drug if your in their care, they just give it to you so you have to lump it when you take these medications.

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6

I'm on invega sustenna now but I'm stopping it doctor has me on a few other meds I'm hoping I'll be fine with just the other meds I have a lot of restlessness and nightmares every night from shot I'm up half the night and when I'm awake I can't sit still I've lost interest in everything but I still get pleasure from some small things like going for coffee with my friend and meditating which both help I was on the shot for sometime I was able to quit cannibus and alcohol and have relative success with progress but its to the point where I need off it and the doctor was going to ween me off it but I can't take another shot I can't Stan it anymore I don't want to wait six months to a year to see improvement plus I'm worried about the fatal side effects of the drug as my family genetic are pron to strokes. Its has been hard dealing with the effects of the drug but I have had some good days due to meditation also I've noticed that whenever I get progress with meditation my voices become more bareable and nicer but the restlessness is hiddering any further progress with the mwditation. But the one most important thing I did with surviving the mental illness was taking a warrior mind state not aggression toward people but the will to see it through till the end and see and meet each daily challenge as it comes and I've had so pretty bad days that I'm surprised I got through my mom and dad help me when they could which helped a lot they helped more with financial things though and making sure I was on my meds with talking to the doctors with me the last time I went off invega I was hospitalized because I didn't have the right pills as a back up not that I was taking them too so this time I'm going to keep taking my pills and I have two antiphycotics in pill form so I should be alright and I'm a lot more experienced with dealing with symptoms I'm hoping the doctor will accept this and work with me to keep Me afloat

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7

Hello My daughter had Invega injection beginning off this month. It has stopped her psychosis and gotten rid of her anger. The first 12 days much pain in her neck and stiff ness could not stand it. She is motivated more, but a lot of restlessness cant sit or stand long.Also high prolactin level.Feels unbalanced. She does not have a psychiatrist yet after hospital trying to find one for Medicade.Dont like this med got it in hospital. Will try and change soon. just cant go through this again with other ingection No

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8

I'm coming off invega sustenna now. This was the medication from hell. It made me severely depressed & lethargic, not to mention it increased my prolactin levels which made me gain 30lbs, has given me acne and caused hair growth on my face (I'm female, so it's embarrassing) thankfully my last shot was the beginning of December, however my blood levels still show high prolactic, so all I can do is wait. Unless it's absolutely necessary I wouldn't recommend anyone take invega sustenna... At least just take the pill form, so if you have negative side effects yiu can get it out of your system quicker... Oh yeah, not to mention, the drug companies make a killing of this drug- it's super pricey.

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9

I have been off of invega sustenna for three months now. I received a 234mg loading dose and a week later a 156mg initial dose. So basically im screwed. Ive been reading up on it a lot and people who've just received the 117mg doses take anywhere from 5-7 months to get better and its probably going to take longer for me since i had close to 400mg in my body. I suffer from severe anhedonia, loss of interest in life, i am practically impotent. I cant feel any feeling in my shaft and only a tiny bit on my tip. I can climax, though it is really weak. The issues haven't gotten any better, neither has my apathy. Its probably going to take a year for me to recover enough to where i can function and get feelings back. But probably longer to fully recover back to my old self. God be with all of us who have had this horrible inj. I pray that we all recover and are able to lead our ordinary lives once again.

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10

Just starting to come off invega. Been on community treatment order for three years. Had server tiredness. Felt like a zombie. Lack of libido. Weight gain. And loss of period. Have been on a high dose and hated ever second of it! Scared how long it will take to get out of my system. Also trying for a baby for last three yes and not sure if I will ever have another one! If so would really like to sue the company who makes it. It is the worst antipsychotic on the market. Been of for two weeks now. Still feel the same except I have headaches, dizziness and nausea! If anyone recommends you go on this I strongly recommend not to. Still had all negative thoughts only stopped them racing!

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11

I took Invega in pill form for one week, then my therapist gave me a shot with 234 mg. I've been bed ridden for the past 4 weeks. Went to emergency room last night because there seems to be no subsiding of the symptoms...slurred speech, blurred vision, walk and talk like a zombie, very week, stiff jaw, shaking. They checked all my vitals in the hospital, EKG, cat scan, blood work and u/a all came back normal. Basically they wanted to rule out that I wasn't a crack head. This feels like rock bottom. I hope and pray no permanent damage has been done, but judging from the other posts it looks like recovery from this drug is going to take time.

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12

Hi. Its 2016. Do you feel better? My last shot was march 25 2016.... Did you get better?

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13

Hi I took invega sustenna. Are you feeling better after a year? I can't run more than a mile no more and I used to do 8.

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14

It does get better! I used to be tired, not able to run or do anything. No libido, severe anhedonia. Severe suicidal thoughts every day. Not able to get drunk. Sleeping 18 hours a day. Weight gain. I took inj's. for about 8 months and I stopped taking it about 8 months ago. I AM COMPLETELY BACK TO NORMAL. Don't lose hope. After about 6-8 months you'll be back to normal, i swear it has been the worst time of my life going through this waiting period time wondering if I would ever come back to a normal life. {edited for privacy}. I have been through this, you'll be able to recover.

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15

How many shots did you get? I got a total of 2 shots... Is there any way to see if its in the blood... Also, are you able to work out like normal? Also there was a guy who got a 1 year worth of shots and did not recover after 11 years... Are you sure it will get better?

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16

How many miles are you able to run? Also, when you say libido, do you mean your sex life...? How is your sex life? Is it back to normal? Are you able to get naturally aroused when you think of beautiful women without having to touch your genitals? I still have sexual issues and can't run.... Do you know why there have been some people who never recovered? I know a guy who got 1 year of inj's. and is not normal after 11 years.

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17

Totally. You can detect it with your prolactin level in the blood. It will rise once you get the inj's. and come back to normal when you stop. The only reason I post on forums is to give hope to people as I never read anything positive about people getting back to a normal life after taking invega sustenna. I run about that, 8 miles a day right now. When I was on this, I could not work out at all, I was a total waste. I did not feel human at all and I was just thinking about the past. I had a job for 3 months and got interned in an hospital because I wanted to suicide. I received about 10 shots. It took me about 7 months after the last inj. to feel better. The recovery is pretty drastic, 1 day I had suicidal thoughts, the following day I started feeling better and it went uphill in a matter of two weeks until I felt like I used to be. For the guy that did not recover after 11 years I don't know what to tell you, this med is hell on earth I don't wish that to my worst enemy but it worked out for me. If you only got two shots I don't see how you won't come back to normal. When I say normal I mean complete recovery. No anhedonia, no suicidal thoughts, libido, ability to work out like you were capable before, self confidence, ability to socialize with people. The only thing for me is that I now have high cholesterol but I also have hope it will go back to normal with time. Also don't forget, you will unlikely read positive things on the matter because when you feel good you don't necessarily search on forums about invega and suicide or what so ever. I however told myself I would give a message of hope if I felt better and that's the case. Don't give up, you'll feel human again.

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18

Yes normal sex life, ability to get aroused easily without a woman touching me. I had a very bad sexual dysfunction, everything came back 100%. I don't know why people wouldn't recover honestly. You only got 2 shots, give yourself at least 6-7 months, in my opinion you have very good chances to recover from this.

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19

Eduardo I'm happy. You gave me hope... {edited for privacy}. It'd be nice to talk to someone that has went through what I went through... Also I'm 5'8 and 190: on what month did you notice weight loss?

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20

This is most horroble medication after benzos invented strait from the nazi death camps I have been off sustaona for 3 months and just starting to feel a bit better I was given it for benzo withdrawal by a useless non listening phychiatrist anyway looking forward to it gets out of my system it has been purr hell

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358

Re: Edouard (# 17) Expand Referenced Message

Hello, I am looking for some hope. I had four injections of paliperdone (Invega Sustenna) - two in December 2022, one in January 2023, and one in February 2023 - and it has ruined my life. It will be 10 months since my last injection, and everything is in a state of despair. I’m going through hell from paliperdrone (aka Invega Sustenna). I had 4 injections of the poison, and I have lost everything. I’ve lost my concentration, I can’t think or feel. I have no emotions. I can’t concentrate on anything, e.g., read, write, watch TV/YouTube, paint, or listen to music.

I have lost all my motivation. I can’t do anything; I can’t even take care of myself, e.g., shower/brush my teeth, change my clothes. I just don’t care about anything or anyone anymore, just no feelings.

I have no hunger or thirst. Everything is dead. My body is not functioning anymore. My personality has gone; I’m dead inside.

I struggle to retain information and talk to people. It’s so hard to understand anything.

On top of it all, I can’t sleep. I haven’t slept since November 2022, which was before I had the first injection. I had two injections in December - the first one was 100mg, and the second was 50mg. One in January was 50mg, and one in February was 50mg. My life has been hell. It’s been 9 months since my last injection, and there has been no improvement.

I wish I had hope. I don’t think I will recover from this. It’s a nightmare. I just want to die.

I think your post was a very long time ago. I just wanted to reach out to see if you are still around and how you recovered. How did you do it?

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357

Re: Rayman7 (# 319) Expand Referenced Message

Did you recover from invega?

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356

Re: Nina (# 352) Expand Referenced Message

Did you recover? How long did it take?

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355

I'm off the invega injections. My period is coming back. I was off meds for 5 months and lost 20 lbs. My father hospitalized me because I changed. My so called friend screamed at me if I was taking pills in a restaurant. I was pissed off and picked on her. Now, the psychiatrist put me on injections of Abilify. I gained the weight back. I don't know what to do. God, please help me!!!

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354

For anyone who came upon this...
I stopped invega sustena and felt differences immediately. Jalf life refers to the time that half of the drug is still effective. So if it's half life is 26 days then at 26 days only 50% of the medication is working in your body. I've been off for 2 weeks and have lost 4 lbs. Had much less hunger cravings.

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353

Re: Nina (# 352) Expand Referenced Message

So i was given about 5 injections of this poison about 10 years ago. It has ruined my life. The problems gradually got better, but never have i come close to properly recovering. It must be said my symptoms were worse than most people. I hear that most people recover, i just live through each day of misery with nothing to look forward to. I used to believe in god, think jesus could make miracles happen. I turn on the tv tonight asking god for an answer to this and all i get are stupid superhero movies whilst i sit waiting for god to provide an answer and a remedy to the poison he created. But enough about the god stuff. Invega caused me internal restlessness, vibrations, anhedonia, inability to cry, inability to concentrate, akathisia, bouts of hatred and anger, emotional instability where i now swear all the time when i never used to, the list of "side effects" goes on.

I used to be a gentle kind person and invega poisened my being, my life, my soul and everything i believed in. I'm now classified as disabled because i hear voices, the invega caused me to hear the voices. I no longer enjoy music or going out, i no longer see my family or friends, every night i have nightmares. And nothing stops them. I can't even sleep in my bed anymore. It gets better over time, but i never recovered. I never found any medicine which really helped me. A few things which are of benefit include b6, drinking lots of tea or coffee, valium helps to get to sleep, and largactil is an antipsychotic that might help. That helps me to sleep and quietens the voices i hear. Yep, the invega made me start hearing voices. invega is an absolute poison and i will hate and despise paul janssen the rest of my miserable life.

I can't believe they gave a nobel prize to that tyrant who created 3 different poisons. invega, haleperidol and fentenyl. Every day i die a bit more. Another happy memory gone. All because he wanted a f****** medal. I believe that it is only right that people who have been poisened by invega should be allowed to take any types of drugs available in an effort to self heal. Unfortunately the only things that really allowed me to avoid the misery was synthetic weed and when that became illegal i spent 12 months drinking everyday. Partying like there was no tomorrow, because there is no tomorrow. Tomorrow will be another misery and the first thing i hear will be another voice in my head caused by this "medicine". I just wish god would make a cure.

My family are all great believers in the healing power of jesus but i can't even get an explanation from jesus let alone a medicine to fix me. F*** Paul Janssen, and all the other layers of bureaucracy that were involved in making, testing, marketing, prescribing and allowing this poison to be used on people. All of them are guilty. 1 person poisoned by invega is 1 person too many. But Janssen don't care, 1 persons death is just collateral damage on the way to them making more money. I hope that other people manage to recover, because i read that it is possible, just not for me. Everyday i keep looking everywhere for an answer on how i can get my life back. Everyday i keep looking for information on what this medicine did to me so i can try to cure myself. But all i ever see is bruce willis and his bevy of superheros on tv. Be a real hero and help the people who were poisoned by janssen.

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352

I quitted the injections (6) 7 months ago and have no improvements. I am very worried also because I don't sleep at all. I have very severe anhedonia. I can do nothing. Please help

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351

Last year the psychiatrist gave me fewer injections. I started to feel bad and went to the hospital. They gave me the vaccine for covid and I became severely ill. I was catatonic and had a blood clot, pulmonary embolism. This year I am going to try and get off the drug again. The doctor is asking for blood work to see how much drug is in my blood. This is not standard practice. I am on a community treatment order, so I am at the mercy of the doctor. I am going to ask her to give the injection every 5 weeks instead of every 4 weeks. I don't want anymore of this drug, but I have to beg for fewer injections and hopefully get to the point where the injections will stop.

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Re: Joanne (# 323) Expand Referenced Message

How are you now?

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349

Re: Narshe81 (# 4) Expand Referenced Message

How are you doing? Did it get better?

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