Paliperidone and Hormonal Changes: What Users Say

• 123...
• Taken for 1 to 6 months
• June 4, 2020

Paliperidone for Schizophrenia "NIGHTMARE! I do not recommend this drug. I was taking it for 6 weeks (3 weeks to get me on 9 mg and 3 weeks to get me off). Terrible vivid nightmares that seemed more real than reality. I was wondering if I am dreaming or is it real all the time. My mind was empty. My muscles were in pain, I couldn't properly move my body because of 'hard' muscles. I had a feeling of being pregnant - smell and taste changed, I had contractions and I produced milk. Only when this happened doctors decided to put me off that drug. Thank God for body side effects, because doctors don't take it seriously when you tell them that a drug is bad for the mind, emotions, etc."

• Rem...
• October 14, 2019

Paliperidone for Schizophrenia "I took 6 injections over a 6-month period. I didn't notice much in the first couple of months. It helped with the paranoia, I still heard voices to a lesser extent. Around the 5th month, I had noticed I gained 50 lbs (115 to 165). It happened so rapidly. I also began to lactate. That was all horrible, but the worst of it was the severe anhedonia. They wanted to slowly taper me off the injection, but I refused to take any more after the 6-month period. I felt mentally slower. I got no pleasure from listening to music or watching TV. I stopped laughing. This is just my personal experience, but if you look up this medicine, you will find there are many people who have gone through a similar experience. It's been 14 months since my last injection, and I think I have mentally fully recovered. I think this drug is too potent. I am almost certain it gave me some sort of brain damage. One of the biggest regrets of my life is taking this drug, I was better off before."

• Uni...
• April 13, 2021

Paliperidone for Schizoaffective Disorder "I've been on Invega for 3 years. The beginning was bad. I had so much energy I couldn't sit still or get comfortable. I gained weight but it got better. I started to see the benefits, for example, less tension and edginess, better decision-making, sleep improvements, and feeling less scared and paranoid. Then I got diagnosed with high levels of prolactin. It has been over a year, and they still can't get it under control, which means I'm always itchy and overweight. Now I was diagnosed with pre-diabetes because of the meds. I was told to eat right and exercise every day for the rest of my life. And then he laughed!! It has been about a month since the pre-diabetes diagnosis, and I have only lost 1 kg. That's with healthy eating and exercise. My doctor thinks the benefits still outweigh the risks, so they are constantly pushing the drug on me, but I'm itchy, pre-diabetic, and overweight."

• Ell...
• Taken for less than 1 month
• March 19, 2019

Paliperidone for Schizoaffective Disorder "I have felt very tired and just lethargic and lost interest in the Bible, which I once loved with a great passion. No one will take me at my word, and I have tried to get off this medication, but the doctor and my family won't let me even after I told them how much I don't like it. I have no periods, have high prolactin, and hand tremors in my right hand. Feel like sleeping all the time and would do anything to stop taking this medication. It is poison and should be taken off the market and never given to anyone. I'd rather hear voices than feel like I do on this medication."

• Anonymous
• Taken for 1 to 6 months
• March 20, 2018

Paliperidone for Schizoaffective Disorder "This drug has ruined my life. It caused me to lactate. Even 4 months later off the medicine, I am still lactating and my prolactin got even higher! I had an MRI and it didn't show a pituitary tumor, which this drug can cause. I am now being referred to a neurosurgeon because nobody knows what to do and nobody knows how my prolactin can still be so high. A few years ago, my pituitary gland was symmetrical, but ever since being on Invega, my pituitary gland is asymmetrical. One side is bigger than the other. This drug caused my pituitary to change its shape. On top of that, I lost my periods completely, so now I'm infertile. It also made me eat like a horse and gain weight. My life is ruined. Beware of this drug."

• Mor...
• Taken for 1 to 2 years
• February 29, 2020

Paliperidone for Schizoaffective Disorder "While the Invega Sustenna negated my psychosis, I have experienced anhedonia and lactation due to raised prolactin levels. I can't enjoy music or anything else for that matter. I also now have a tic where I have to move my mouth, I don't know if it's medication-related. I get my period once every three months and have lowered sexual pleasure. I feel like this drug took any enjoyment out of life, and I'd rather be on something else as my symptoms are not severe and Invega is not good."

• The...
• May 11, 2018

Paliperidone "Invega tortured me. My life was ruined. The drs (lowercase on purpose) will never admit the side effects greatly outweigh the benefits (there are none). It is a chemical lobotomy. It helps the same way getting part of your brain taken out helps with the symptoms. Severe akathisia, low testosterone for four months, feeling like muscles are dying (they shrunk a ton), fat gain, high prolactin, destroyed my metabolism, impulsive outbursts. My dr didn't even know the half-life was as long as it was. It stays in your system for ages. There are so many tales of misdiagnosis. If you live in a state where they can force you to continue the torture at home, then I recommend you submit a daily vlog."

• Hor...
• June 16, 2022

Paliperidone for Schizoaffective Disorder "While on Invega, I used to have tremors, shake every day, couldn't focus, was constipated for a month, my belly was swollen, my prolactin levels increased drastically, I didn't get my period for months, I was extremely slow, had no sex drive, and had horrible urinary incontinence. When I look at pictures from that time, it is clear that I was sedated, my face changed, I couldn't even open my eyes properly. Everybody thought that I was weird. I didn't know that urinary incontinence was caused by this drug, but now I see that it is a common side effect. It was so stressful being on this drug, DON'T TAKE THIS HORRIBLE INJECTION. Worst years of my life."

• h0m...
• Taken for 2 to 5 years
• February 8, 2018

Paliperidone for Schizophrenia "So I've been on this medication since 2014. Diagnosed with schizophrenia back in 2011 when I told doctors I was visited by spirits at a young age. They didn't believe me, though I swear on my life it is true. Anyway, I was on 150 mg. Had the worst side effects you could imagine. Very high prolactin levels, lactating from my breasts, amenorrhea, absolutely no motivation at all, pretty much glued to my bed & phone. So they adjusted my dose twice, and now I am feeling a bit better. Not a lot better, though I would say. They say that a schizophrenia diagnosis is something you deal with for life, so I would be careful what you tell your doctors. You could be on medication for life."

• Anonymous
• July 16, 2010

Paliperidone for Schizoaffective Disorder "I've been hearing voices for 2.5 years. Initially, I had severe emotional swings and delusions created by the voices and my interaction with them. I began taking Invega 18 months ago - this was very successful in moderating the emotions and generally calming my mental state. In terms of side effects: I am really struggling to lose any weight even with a good diet and exercise, I have very high prolactin levels - this contributes to me not getting periods, having occasional breast discharge, and I believe is responsible for 'anorgasmia' - where I have very low sexual desire and arousal, and feelings of orgasm are very subdued. These side effects have become more apparent over time."

• Ano...
• June 5, 2018

For Schizophrenia "On a high dose, it was worse. But, even on a low dose, I experienced poverty of thought, slow movement and thinking, not being able to memorize anything, not being able to think creatively, a huge IQ drop, inability to learn new things, muscle cramps, a weight gain of over 30 kg, akathisia, loss of periods, breasts sagging and becoming heavy and lactating, muscle seemingly wasted away, swelling in my feet and legs (possibly edema), extremely high levels of prolactin in my blood (over 1,700 MUI), lack of motivation, infection in the site of injection, high cholesterol, difficulty absorbing nutrients, suicidal ideation, stretch marks, flat affect in my face, emotions flat like a zombie with no happiness or pleasure, and more. I have stopped taking the drug for about four months now, but I still experience side effects, including loss of period. I'm only 27 years old, but I'm worried the drugs have made me permanently infertile."

• Ano...
• June 5, 2018

For Schizophrenia "On a high dose, it was worse. But, even on a low dose, I experienced poverty of thought, slow movement and thinking, not being able to memorize anything, not being able to think creatively, a huge IQ drop, inability to learn new things, muscle cramps, a weight gain of over 30 kg, akathisia, loss of periods, breasts sagging and becoming heavy and lactating, muscle seemingly wasted away, swelling in my feet and legs (possibly edema), extremely high levels of prolactin in my blood (over 1,700 MUI), lack of motivation, infection in the site of injection, high cholesterol, difficulty absorbing nutrients, suicidal ideation, stretch marks, flat affect in my face, emotions flat like a zombie with no happiness or pleasure, and more. I have stopped taking the drug for about four months now, but I still experience side effects, including loss of period. I'm only 27 years old, but I'm worried the drugs have made me permanently infertile."

• Vic...
• Taken for 2 to 5 years
• January 10, 2019

For Schizoaffective Disorder "Invega injections stopped my period at age 46, that was three years ago. My prolactin levels are high, but the doctor is not concerned. My liver enzymes are high as well. I gained 55 pounds. I can't stand still, I'm restless. My short-term memory is bad. I can't work. I asked the doctor to wean me off the medication, but he refuses. I am on a Community Treatment Order, which forces me to be medicated. I stopped the medication many times and ended up in the hospital. I have to hire a lawyer to get off the Community Treatment Order."

• tur...
• Taken for 5 to 10 years
• March 14, 2019

Paliperidone for Schizophrenia "I have been on Invega Trinza for almost four years for my schizophrenia. The first side effect I had was weight gain of over 70 lbs. I stopped having my period due to high prolactin. I also found out I have high triglycerides, high cholesterol, and a low white blood cell count. I have schizophrenia, so I do need this medicine. But seriously, weighing the side effects I have against the mental stability I have."

• Ton...
• June 3, 2017

Paliperidone for Schizophrenia "Before my psychotic break that turned into a delusional police chase, I was manic, terribly delusional, thought the devil was everywhere I went, thought people were after me, thought the devil controlled electronics and the internet. Just too many bad symptoms, and after receiving the Invega injection, I've been told that I was more outgoing and had absolutely no symptoms. But the side effects suck, such as high prolactin levels, which resulted in low testosterone, anhedonia, and lower emotions."

• Unh...
• November 21, 2017

For Depression "I was given this drug after suffering a stressful episode from PTSD trauma. I don't think it is for PTSD. As soon as I got injected with this drug, I had a horrible feeling of extreme restlessness. I could not sit still and felt the need to be constantly moving. It was horrible, and then my cholesterol and prolactin both became elevated. I talked to the doctor about this, and she took me seriously. My hand has begun contracting and relaxing against my will. It wants to make a fist constantly. My doctor will be switching me to Abilify and off of this horrible drug. It has caused me a lot of suffering and problems. It was also making me lactate. I'm very upset to have been put on this drug. It hurt me a lot."

• Pop...
• Taken for 2 to 5 years
• July 7, 2019

For Schizophrenia "Warning, ladies: I was injected monthly with paliperidone over a period of 3-4 years, approximately 4 years off it. I could handle the weight gain and inability to lose weight (jumping from 60 kg to 80 kg in my early 20s, which was depressing in itself), but I began to lactate outside of childbirth. I was told this was due to a high level of prolactin being secreted. I was told to get checked for the possibility of breast cancer and was then treated with aripiprazole in combination to lower the hormone. I am now pregnant with my second child. With my first child, I was unable to breastfeed - I secrete a low level of prolactin now, if any at all. I've not been entered in a national breast screening program, despite having a hormonal imbalance since the age of 24, and I am now 30. And again, I am unable to breastfeed my second child. For the men: erectile dysfunction, weight gain, and loss of libido should definitely be investigated, as hormones are seriously affected by paliperidone."

• Sum...
• July 11, 2021

For Schizophrenia "AVOID. I was on this for psychosis with mood disorder. Please save yourself time and money by not trying this. I’ve been on the depot of paliperidone for nearly a year. It does slightly help with hallucinations and delusions, but the side effects are horrible. I couldn’t focus in my lectures, as I couldn’t think, and my mind would just wander off. I gained over 40 kg in under 6 months. I was lactating, which is highly abnormal for a teenager. I became a couch potato, as I had no motivation to do anything. The side effects definitely outweigh the benefits."

• Lea...
• Taken for 1 to 6 months
• May 20, 2020

Paliperidone for Schizoaffective Disorder "I’m on Invega approximately 6 weeks. I am diagnosed about 5 years, never settling on any drug as they have me reactions. I am extremely sensitive to medication and always suffer high prolactin levels. On one of my previous medications, after 6 weeks, milk started coming out of my breasts. I was switched to Invega and so far, so good. It has brought out my creative side and I am much more alert, although it’s hard to get up in the morning as I keep falling back to sleep. I am demanding another blood test for tomorrow as I want to know if my prolactin levels have gone down at all. If not, I’m getting off this drug as that’s not good for your body and it’s terrifying having milk coming out when it’s not supposed to. I’ve heard of Caplyta, the new drug, and that has less side effects, but the reviews online aren’t great."

• Tyy...
• Taken for 1 to 6 months
• November 19, 2017

For Bipolar Disorder "For my bipolar 1, I have been on Invega 156 mg since July, now it's November, and I have minimal side effects, including high prolactin and some tremors once a day. Zero symptoms of mania and psychosis. No weight gain, which is why it's a ten. Overall, a good med, sleep good. No anxiety."

• AFR...
• May 4, 2021

For Schizophrenia "Apparently, according to the experts, I had a second psychotic episode, which I don’t agree with, and the doctor diagnosed me with schizophrenia, which I don’t agree with. I was hospitalized on a Section 3, I was jumped on and forced onto it by the hospital staff, injected into my buttocks. I was in the hospital for 6 months on paliperidone injection 100 ml and then was put on a CTO, in which I had to take it in the community. Side effects: 4 stone weight gain, stretch marks, high prolactin levels, postural hypertension, dizzy spells, and feeling in pain all over. All I could do was lay in my bed, depressed. DO NOT take this drug."

• Ted...
• Taken for 2 to 5 years
• February 21, 2022

Paliperidone "A quiet execution awaits you. It’s a lobotomy for 2022. Your prolactin will be so high you'd be impotent and won’t remember what a sex drive is. Prepare to say goodbye to all your friends and join a club that’s worse than hell. Carry on taking this if you’re curious about becoming the worst possible version of yourself - obese and void of life and happiness. Save up. Leave your country for a few months. Expel all the people that are in your life controlling you. Don’t trust the doctors or health workers. Get signed off. Take a small amount of quetiapine nightly at 25mg. 100mg if you need to get past something for a week max. No more episodes, pleasure in sex and life goals become achieved - become the best version of yourself pre-diagnosis. Beware it’s a year after stopping this poison to feel again, but the process is positive."

• Hem...
• Taken for 6 months to 1 year
• May 2, 2018

For Bipolar Disorder "Invega 78 mg is good. I had no cognitive problems, good energy, minimal weight gain. However, the prolactin is high, 150 ng/ml, and worrying me. I wish to stay on this medication, but don’t have low bone density from lack of periods, and high prolactin seems like a trade-off. Invega causes me to stay happy and without worrying. I am worried if I leave this high prolactin for 20 more years, what will be the ramifications."

• Van...
• Taken for 1 to 2 years
• June 12, 2022

Paliperidone for Schizophrenia "I love Invega. It has helped me with my schizophrenia 100%. No more delusional thoughts and paranoia. No more of this fearful feeling. My life is bright and back to normal. I've been taking it for 2 years. The only side effect I've had is hyperproteinemia. It stopped my periods, had liquid coming out of my breast. You know... symptoms of high prolactin levels. So my doctor put me on Abilify along with a lower dose of Invega Sustenna, and within a month and a half, I had my period and my prolactin went back to normal. I never want to get off this injection because it REALLY took away my mental health problems. I would definitely recommend. Works like a miracle."

• Ann...
• Taken for 6 months to 1 year
• July 18, 2021

Paliperidone for Schizophrenia "This drug works really well to control my positive symptoms like hallucinations, delusions, and paranoia. I still have breakthrough symptoms, but only when very fatigued or stressed, but nowhere near as intense as off medication. I have managed to lose 2 stone (in 6 months) of the 6 stone I put on from taking the Abilify injection. I feel less fatigued, and insomnia isn’t as bad as when taking the other medication. I still have less interest in social situations and relationships, and my sex drive is nonexistent compared to before my illness. All 3 are symptoms of schizophrenia I know can be made worse by medications like these. The main negative is it has increased my prolactin levels to 4 times that of a healthy non-pregnant woman."