Generic Name: Caplyta for Bipolar Disorder (lumateperone)
"Amazing so far. I have been on it for six weeks and after getting past the first three days taking it- which gave me awful headaches, nausea, dry mouth, and fatigue - I started to feel something in me change. After three weeks I can say I noticed that the typical bad, ruminating thoughts of despair and general negativity were decreasing. And now at six weeks I can honestly say I have days where I catch myself and think, “Wow— I haven’t thought anything bad today”. I have never had a med this effective, and have a very sensitive/resistant system that has made med therapy a chore because nothing ever seems to work, or I end up having bad side effects. For the first time in 25+ years I feel hopeful; I am finding real joy in things, laughing genuinely, and I am able to be more compassionate and realistic with the pressures I put on myself. It’s improving my outlook on life and in turn improving my relationships. This is a miracle med for me."
"Caplyta is my fifth trial antipsychotic, and the first one that has produced no side effects. I have noticed a substantial shift in my depression and mood. It has not completely alleviated all of my symptoms, but it is definitely helping. I take it in combination with Lamictal 300 and Divalproex 250."
"Here is a weird one. I've been on Caplyta for a week as of today. And I seem to embarrassingly lost bladder control. Yesterday I had 3 accidents and today I have had 3 as well! It hits out of nowhere that I have to go, and if I don't get to a toilet within a minute, I just go uncontrollably on myself. I can't stop it. I'm 32, haven't had a child in nearly 10 years. I don't know what could be causing this other than I've been on a new medicine. I'm so embarrassed. I'm a school bus driver, it happened today at the end of my route before I could make it back to the bus yard, and I soaked myself and the seat of the bus. I was so embarrassed on the walk to my car! Has anyone else had this happen?"
"Caplyta is a game changer! For me, my bipolar depression is mostly compounded by my ADHD, creating extremely low energy and so much restlessness. Because all other antipsychotics block the D1 dopamine receptor, they never help me beyond pulling me out of an acute hypomanic or mixed episode. Caplyta is a D1 and D2 agonist (promoter)! It has been remarkable for keeping me level and helping with my depression without causing any weight gain whatsoever. Two months on it, and I’ve lost everything I gained and more from when I was on Abilify. Caplyta is my savior. It’s my miracle all-in-one. Please try it, and give it a few weeks."
"I’m very early into taking this medication. About six days to be exact. I have BP1 disorder, generalized anxiety, and panic disorder. I have been on several different medications over the years. Currently, I take 450mg ER Lithium once in the AM and twice at night. Lamictal (brand name) 100mg once daily and 1mg Xanax 4x daily as needed. Speaking with my psychiatrist about my irritability and flat mood, we decided to give Caplyta a try. I was skeptical because of how new it is, not to mention seemingly bad reviews. That being said, the first night was a bit hairy. I would get unbelievably cold like I was in Antarctica with no clothes on. Then I would be burning up. A brutal headache ensued late and into the next day. I was considering not taking it the next day, but I decided to stick with it. I’m glad I did. The side effects were drastically less the next day and more or less gone completely, and I noticed a difference for sure (i.e., more engaged, better mood)"
"My God, this medication has changed my life. I am able to separate my emotions from my logic. I'm not depressed or angry anymore. Is this what life is like for 'normal people'? I feel like I have hope in my life which I really haven't had before. I have bipolar 2 as well as C-PTSD. I take this alongside Lamictal, Celexa, and Prazosin (for PTSD nightmares). Whoever made this drug is a lifesaver. I've had side effects of dry mouth and felt an improvement within 2 weeks."
"I've been on Caplyta going on 4 months now. My depression has never been worse, I now have high blood pressure, dystonia, heartbeat irregularities, SEVERE constipation, severe anxiety, and broken sleep, about 10 hours a day. I've never felt this horrible on an antipsychotic med in my life before, and I've been on most of them. I can't get out of bed to shower, do chores, do any self-care, cooking, clean, etc. These drugs' side effects are worse than any drug I've taken for my BP2 depression. I've almost landed in the ER for heart palpitations and high blood pressure and resting heart rate in the high 80s to low 90s. The amount of apathy I have is unlike anything I've experienced. It may work well for schizophrenia, but for my BP2, it is the worst drug I've ever taken in over 32 years. I would never recommend this drug to anyone for BP2 depression."
"Caplyta has changed my life. For many years, I took other antipsychotics and also tried lithium. They left me with tremors, gaining 75 pounds, suicidally depressed. I have bipolar type 1, sensory integration disorder, ADD, agoraphobia, OCD, and anxiety. On all previous mood stabilizers and antipsychotics, I had a flat mood, no real happiness. But still crushing bouts of depression. Also, I have never been able to keep my house clean. I often hoard. I have issues with keeping up my hygiene. I was full of self-doubts and paralyzed with fear. Just generally waiting to die. I have been tweaking the Caplyta, 42mg, with my other meds - Trintellix 20mg, buspirone 30mg, Rexulti 4mg, and clonazepam 2mg for sleep or as needed. I started taking Caplyta in late May. I felt it really kicked in September. My house is immaculate. I bathe every day. My intrusive thoughts/voices have significantly decreased. I rarely feel suicidal. I can leave my house alone. I have lost weight. I feel amazing!"
"Caplyta made my depression worse. It was like I was in a black hole for a month. It got rid of my mania for sure. But the crushing depression made it a really bad choice for me. I will never take this again."
"I’ve been taking Caplyta for almost a month for bipolar depression. I immediately felt better emotionally but have developed a perpetual need to yawn/take a deep breath and a tightness across my upper abdomen. I’ve also noticed tension in the front of my neck and chest. It is not ideal and I am constantly debating these pros and cons. I have more mental clarity than I have had in years, but I am aggravated by yawning or semi-nauseous."
"Doctor started me on this new medicine as an adjunct to the other medications I take. It took around 2 weeks to notice any real effects from this drug. Caplyta certainly did lift my mood, but I did have to come off of this drug due to the side effects. This is a relatively new drug, and I don’t think many of the side effects are documented well. I stopped because Caplyta made me lose control of my bladder, and it made me feel like I had to go to the bathroom all the time. This was to the point where I got tested for a UTI (negative). I also got shooting pains in my rib cage near my upper chest. I’m not saying it’s a bad drug, just feel it out and listen to your body."
"I started this med a couple of days ago. I feel okay. Extreme dry mouth. I literally woke up in the night to chug milk, water, and OJ. That being said, I usually can only sleep 90 minutes each time I fall asleep through the night. I’ve been sleeping 3-5 hours each time the last couple of nights, and for the first time in years, I'm feeling like I’ve had some rest when I awake. For years, crawling out of bed in the morning, I felt like I had the crap beaten out of me. The only side effect I’m worried about is the weight gain. But I will continue to work with my doctor to see if we can make a go of this. I’ve tried many meds over the years. This is the only one I have hope for, as the others made me crazier, made me want to gamble, and one had me so zombified that I was going to Jack in the Box every night for like 200 mini churros."
"I would ignore these negative reviews. They seem to be people who only stayed on the drug for a couple days. I have bipolar depression. 11 months ago I was hit with the worst depression of my life. I couldn't get off my bed or off the couch. I slept a ton. My house was trashed for months. My doctor wanted me to try caplyta. Now. The first day I took it, it was horrifying. I took it at night and woke up in the middle of the night with the worst throbbing headache I have ever had. ER worthy. I rushed to take a 800mg ibuprofen and that only cut the pain down in half. A few hours after I went to bed after being awoken by a headache, I woke up in the am. I felt completely drunk. I couldn't walk straight, bumping into walls. Etc. I will tell you. After the first day of taking this med, the next day I had no symptoms. No headache, I did feel a little wobbly, but not as bad as the first day. 3rd day, no side effects. The 3rd day is when my depression completely vanished. Amazing"
"I have been on Caplyta for a week and 2 days. I have been so hopeful for 6 years now that a new medication could help with my depression. I've had a bipolar 1 diagnosis for almost 20 years now. Abilify was life-changing for me. It worked for me all on its own for about 12 years!! But it stopped working. I like to run a little hypomanic, which is where I find myself right now. However, I have also stopped my Wellbutrin and tapered off Abilify all within a week too. The first few days of Caplyta, I was exhausted around the clock. I also have very vivid dreams. The tiredness gets better each day. I haven't experienced anything else physically. I am exercising again, I am writing again, and I am hopeful. So it's definitely working for me so far!"
"I'm currently on Caplyta 42 mg and have been for over 3 months. It has vastly improved my life and allowed me to get back to a normal version of myself. I've tried several other atypical antipsychotics like Latuda, Vraylar, and Geodon, each with varying success. Vraylar was the best antipsychotic I was on, sadly, it quit working. Caplyta has gotten closer to the stability I had with Vraylar. However, I understand that every person has different success with different medications, so do not compare my experience to others. Caplyta, though, is very expensive, and with my insurance switching in the coming months, I may be forced to switch once again, which I do not want due to the success of Caplyta. I've had no noticeable side effects from this medication, and it does not interact with my other medications prescribed, which is a major advantage."
"FYI, there is a lot of you out there expecting Caplyta to start working to relieve your symptoms on day one when the pharma corpos clearly state on their websites that Caplyta begins to work after two weeks but doesn't reach full strength until after six weeks of taking Caplyta. Side effects may start up any day, even on day one, and they can really suck, so call your doctor rather than wait and see if it all fixes itself. I'm on Caplyta, which worked well for me, it changed my life and even saved it as I almost committed suicide before I was stopped by my wife, who talked me out of it. I decided to give meds a try as a last resort. One last try. The Caplyta, lithium, and Lamictal greatly improved my bipolar symptoms as the weeks went by, and eventually, they vanished along with my suicidal urges. My marriage was saved as all of the chaos I caused during my episodes were now just memories of a previous life 1.5 years ago."
"Took this on day one for bipolar 2, and 2 hours later I felt like I had icy hot all over my body. Then I felt lethargic to the point I had slurred speech, and I could barely move without help. I had a very dry mouth and excessive thirst. The severe headache started, so I took a nap for about an hour. I woke up with neck pain connecting to the back of my head, nausea, and vomiting. A 2-hour shower eased the headache very little, but it continued along with the nausea until the following day. Also, on the following day I had dark urination. I was advised to discontinue the medication."
"Took Caplyta for the first time and only time 2 days ago. I am also on lamotrigine 400 mg and Lexapro 15 mg. The next morning, I could barely open my eyes, that’s how drugged up I felt. I felt dizzy, foggy, nauseous, and confused. I had one of the worst headaches I have ever experienced. My husband had to come home from work that morning because I literally could not function and take care of our 9-month-old. I slept all day, but the headache got worse. I did not take it last night, and I am still having horrible side effects. I couldn’t go to work because I still feel very foggy. My insides feel like they are burning. I either need to explosively vomit or go to the bathroom but can’t do either. I still have a severe headache, and my pee is also unusually dark. I’m so bummed. I had high hopes for this med, but I have never reacted to a medication like this in the last 14 years of being on meds."
"My doctor recommended Caplyta 10 mg. I have been taking it for two weeks and can barely get out of bed. My hands and feet keep falling asleep, but I can't find that as a side effect anywhere. It's supposed to help with depression, but I feel worse. I keep thinking of sad things and crying, which is weird for me. I'm hot all the time, which is fine for winter but won't be in a few months. This one is not for me. It reminds me of Seroquel without the munchies. The doctor really hyped this one, but I just don't see the appeal."
"I took Caplyta for almost a year. I had pain all over my body, I could hardly move my neck. When I finally stopped the medication, I had no pain in about 2 weeks. I have taken a lot of drugs for my condition, but this was by far the worst. Personally, I think it is a very dangerous medication. I really thought it would kill me!"
"I was on Depakote for a while, and it helped, but it didn't deal with the depression very well. I asked to try out Prozac, but it was overkill for me, even in small doses. I told my doctor that the Depakote wasn't keeping up with me, and so she said, let's give Caplyta a go. It was a big difference. Depakote stopped my mood swings dead in their tracks. Caplyta has a take-it-easy approach and really clears something up before letting the mood stabilization settle. I did not have any side effects from it. No headache or anything, but I'm really good at meditation techniques that stop headaches from coming on, so that could have helped. Caplyta for me has been a very clean feeling, so it has helped with my depression. Pretty amazing drug."
"Caplyta has made me feel nothing but anger, annoyance, and frustration. I haven’t felt a single positive emotion since starting it. It’s not even a listed side effect. It has made me so angry, so constantly, that I cry every day out of pure anger. Constant, uncontrolled anger every day. No other emotions."
"This medicine caused problems with temperature regulation for sure and flu-like symptoms. My nose would get so stuffy I could barely breathe even after taking allergy meds. I also got a severe burning sensation in my arms and legs while feeling cold at the same time. I’d have my heat on 75 with a space heater and electric blanket and still feel cold, but my skin felt like it was being burned inside out."
"This drug has changed my life after failing 14 antidepressants (major classes and atypicals). I have suffered from treatment-resistant bipolar II depression since puberty and was stunned to see that this was only the second drug approved for bipolar II depression next to Seroquel, which turned me into a zombie. Being an antipsychotic, it starts working in days, not weeks or months. I’ve used it for two months. First, I noticed social withdrawal disappear as I became more friendly and outgoing, then noticed the negative thought spirals and intrusive thoughts disappear. Verbal intelligence and executive function seem better. Things like dating, job interviews, and social events became easier. I don’t worry as much about finances or my future or past. The main side effect is morning grogginess. But it gets better. One very important detail: this drug is metabolized by the P450 complex. Do NOT mix with any cannabis products including CBD as you’ll get VERY sick."
"I was prescribed Caplyta by my psychiatrist. I also have taken Wellbutrin and Lamictal for years. The first day I took it I thought I was going to die. My neck was burning hot (but on the inside). Then it radiated up to the lower part of my head, then I could feel the heat radiating down my spine. It felt like a hot poker. My feet swelled up as did my left hand and face. I could barely type a text to my husband for help. I vomited for about 8 hours and couldn’t hold down even a sip of water as my mouth was so dry. My fever was normal but my insides were on fire. My husband called the late night nurse and she said “sounds like an allergic reaction so give her a Benadryl”. I was pretty skeptical so I took a Xanax too to help relax (which she approved to do). I’m still feeling the horrible “wobbly”effects two days later. I would NEVER have taken this knowing what I would have to endure."
