Abilify from the Inside Out
Editorial Note: This is part 2 of Johanna Ryan’s series that started with Dodging Abilify. Abilify is at present the best-selling drug in North America – how come?
In last week’s column, Dodging Abilify, I described the fan-club enthusiasm for this drug among doctors I’ve met, my own reluctance to try it, and what I’d learned about Abilify from casual research.
This week we’ll hear some first-hand accounts of Abilify from the 34 people who have completed RxISK reports – twenty-seven patients, six relatives and one doctor. As a group, they’re a lot less gung-ho on Abilify. I’ll summarize what they told us, then consider why the drug’s still a bestseller.
First, while Abilify was developed as an antipsychotic, only five out of 34 had taken it for a “psychotic” diagnosis: two for schizoaffective disorder, two for schizophrenia, and one after a brief psychotic breakdown. Fourteen were taking it for depression. Six took it for bipolar disorder, which can include psychotic symptoms; however, none of the six reported such symptoms prior to using Abilify. Three took Abilify for other diagnoses, two for poorly-defined “stress” and three for unknown reasons. (One said that “someone, probably a psych doctor of some sort, told my mom I should take this stuff.”)
Fifteen were taking Abilify with antidepressants. One took both Cymbalta and Wellbutrin, another took Wellbutrin and Zoloft. Three were on Cymbalta only, and four on Wellbutrin only. (Two others took Wellbutrin just before or after taking Abilify, but never took them together.) Four were on Celexa or Lexapro; four were on Effexor or Pristiq, and one each on Paxil and Prozac. Other medications people reported taking with Abilify were anticonvulsants (6), stimulants (4), benzodiazepines (3) and lithium (2).
The reports were hard to read. They included three confirmed suicides, possibly four. Many described frightening episodes, severe emotional distress or physical misery. Since most patients were on several meds, some weren’t sure if Abilify alone was the culprit; however, they were sure these were drug-induced states, distinct from the problems they’d originally sought help for. There were three main types: akathisia or agitation, sedated-depressed states, and abnormal movements.
Akathisia and aggression
Eight people reported akathisia, and six reported unusual aggression or anger. The latter included two violent physical assaults on family members. Three reported a first episode of psychosis. One woman’s episode came on when she stopped Abilify. “Bizarre and frightening thoughts” led her to assault her husband, whom she remembers confusing with someone from her childhood. She restarted Abilify, then tapered off the drug more gradually and has now been drug-free for a year “with no bipolar symptoms whatsoever.” Another woman diagnosed as depressed reported a first-ever “hypomanic” episode, with racing thoughts and rash decisions, on stopping Abilify.
Two people described their akathisia as intense physical restlessness, saying they literally could not keep still. One woman felt Abilify had helped her depression, but the restlessness was so intense she had to decrease the dose to one too low to be helpful. Another described having to pace up and down while reading, as she could not sit down. The problem embarrassed her: “People can tell there’s something wrong when you make a lot of movement unnecessarily.”
Others described a more emotional akathisia which led to suicidal urges and outbursts of anger. One woman described “wanting to crawl out of my skin”, with agitation, anxiety, insomnia and thoughts of suicide – a “horrible torturous existence.” Another man described a less intense yet pervasive anger and irritation. He felt he couldn’t complete familiar tasks, like replacing a part in his car, because the simplest obstacle would make him too angry to focus.
Sedation and depression
At the other extreme, 14 people reported over-sedation and cognitive slowing, with memory, concentration and word-finding problems. About half felt a profound emotional numbing, an inability to feel pleasure or care about anything. One man regretted this state, but felt it was better than his prior severe depression. For the rest, however, it brought new or worse depression. Three felt trapped at home by “total lack of interest in life” along with anxious depression; loss of the ability to pursue, or even care about, formerly cherished goals was painful for others. Most reported suicidal thoughts of varying intensity.
Suicide
Three confirmed suicides and one possible suicide were reported. One was a college student prescribed Abilify and Wellbutrin for depression and stress. According to his parents, this led to intrusive thoughts, worsening depression and emotional numbness, including loss of his longtime passion for music. Rather than preventing suicide, they felt the drugs had pushed him to the brink. The second was a middle-aged man who went to his doctor with back pain, admitted to mild work-related stress, and was started on antidepressants. This led to a four-year downward spiral of akathisia, hostility, depression and more medications. His doctor’s final strategy was to double his Cymbalta and add 15 mg Abilify. Three days later he hanged himself. Less was reported about the third suicide, a young woman treated for schizophrenia. She was already on two antipsychotic drugs and a barbiturate; her suicide came a few days after Abilify was added.
The fourth man, already on Effexor, developed paranoid ideas for the first time on starting Abilify, along with a compulsion to search out conspiracy information on the Internet. It wasn’t the thoughts themselves that distressed him, however, so much as his resulting inability to concentrate and work on his creative writing, the main source of meaning and purpose in his life. His family described increasing despair and low self-esteem. They also reported him as deceased; whether by suicide or some other cause wasn’t clear.
Movement disorders
Three people had tremors in a single limb or hand. Two of these cleared up on stopping the drug; one man still had leg tremors a month later. Four others had tardive dyskinesia (TD), a pattern of severe involuntary movements linked to antipsychotic drugs; one woman also had seizures. Their symptoms started after taking Abilify for at least a year, and continued despite stopping the drug. They found their condition painful, debilitating, disfiguring and socially isolating. Two reported shortness of breath; one was newly diagnosed with “asthma”, but her breathing problems may be TD-related. While akathisia affected some patients even at low doses, all those with TD were taking unusually high doses, ranging from 15 mg for a year, to ten years on 30 mg.
Other problems
One man reported a gambling compulsion that began two months after starting Abilify, and gradually escalated until it ruined his finances and personal relationships. Nine people reported gaining large amounts of weight. Four men reported sexual dysfunction. For two, this was part of a broader numbness and apathy; a third man, newly on the drug, reported erectile problems and agitation. The fourth had severe genital pain that not only ruined his sex life but made any physical activity difficult.
Stopping vs. staying on
Of the nine people still taking Abilify, two reported that lowering the dose had solved the problem. One was a doctor reporting on a patient with schizophrenia; we don’t know whether the patient agreed with his assessment. The other worked out for himself the dose that would help him manage his schizo-affective disorder without too many side effects (about half what his doctor prescribed). Two patients had sedation, cognitive problems and weight gain, but feared the return of their original symptoms (delusions in one case, severe depression in the other) if they stopped.
Three people reported being coerced or pressured to keep taking Abilify: one by her employer, another by her doctor, while a third said simply “because I am obligated to.” One man did not explain why he stayed on the drug. Finally, one woman was quite happy with Abilify, although she had taken it for only five days. She had gained a lot of weight on a previous antipsychotic, and felt she was already beginning to shed some of it. I’ve heard from several other people who liked taking Abilify, and a few more who found it easy to tolerate for months before problems set in. In all cases, they had taken other antipsychotics first, and felt Abilify caused less sedation and weight gain than their old drug.
Eight people had their worst problems on stopping Abilify; the others primarily had problems while taking the drug. Akathisia and agitation plagued some while on Abilify, and others only when they stopped. Sedation and cognitive problems, however, always began on the drug, and improved on stopping in most cases. Several people reported one set of problems while taking Abilify, and others on stopping. One woman quit after several years of feeling too sedated to function; she suffered from tardive dyskinesia and seizures, but felt her “clarity of thought” returning.
Short-term studies on a “tardive drug”
After reading these reports, I began to think of Abilify as a Tardive Drug. The benefits, if any, would show up early, while the problems could take months or years to emerge. Some, like TD, might not show up till the drug was stopped. Clearly, a six-week study would tell you almost nothing about the overall impact of a drug like this. Yet everything my doctors were being told about Abilify was based on six-week studies, including the ones the FDA had used to approve it for depression.
Some of the animal studies, by contrast, had lasted for a year or more. A summary was posted on the FDA website, and it wasn’t encouraging. After 39 weeks, monkeys on Abilify were underactive, with whole-body tremors and hunched posture. You might almost think they had TD. You might also see it as a preview of what long-term studies on humans would show. Was that why Abilify clinical trials continued to be so short?
The latest one, done by Otsuka in Japan, went by the jazzy English acronym ADMIRE. The abstract explained it involved 3 groups of depressed patients: “fixed dose” (3 mg), “flexible dose” (3-15 mg) and placebo. Both the fixed and flexible-dose Abilify groups improved “to a significantly greater extent” than the placebo group, and Abilify was “well-tolerated.” Higher akathisia rates in the flexible-dose group, it said, might reflect the higher instance of a certain gene affecting drug metabolism among Asians. A closer look at the numbers, however, told the same old story: very modest improvement according to doctors’ ratings, no difference according to patient self-ratings, and high rates of akathisia.
They also showed me what the abstract was hiding: The “flexible-dose” group were not given individually tailored doses from 3 to 15 mg, as one might think. They were actually a “high-dose” group: all had their doses ratcheted up in unison, 3 mg at a time, to 15 mg by the study’s end. They actually “improved” slightly less than the 3-mg group – and 36% suffered akathisia, more than twice the rate of the 3-mg group.
ADMIRE had actually found what many in the RxISK group learned the hard way: Higher doses of Abilify led to worse side effects, with no extra benefit. Akathisia was not an Asian problem, but a dose-dependent problem.
Little baby doses? Yes and no
Fifteen of the RxISK group were taking Abilify plus an antidepressant, yet there was no clear favorite among the pills prescribed. Did it matter? In trying to research this question, I stumbled across the secret of those “little baby doses” being touted for depression.
Most antidepressants are broken down in the liver by the same enzymes that process Abilify. When you take two such drugs, the resulting “traffic jam” will effectively increase the level of Abilify in your blood. Some pills create a bigger traffic jam than others. Paxil and Prozac have a strong effect, with Wellbutrin and Cymbalta not far behind. Celexa and Lexapro have a smaller effect. Your actual Abilify levels might be 150% to 300% of your official dose. Since no exact figures are available, let’s assume your effective dose could double. A 2-mg dose could pack the same punch as 4 mg, a 5-mg dose the same as 10 mg – and for those poor ADMIRE patients, 15 mg may have felt like 30. In addition, side effects like agitation, anxiety, insomnia and nervousness are considered “common” on all these antidepressants, which might increase your odds of having Abilify Akathisia.
In other words, the “little baby dose” was an illusion. Even 2 mg was bigger than it seemed – and doses over 5 mg could put you on a par with patients taking Abilify for psychosis. (Those patients may be taking excessive doses as well: Two patients with psychotic symptoms in the RxISK group found they did better on half the dose their doctor initially prescribed.)
At the very least, Otsuka should warn doctors about combining antidepressants with higher doses of Abilify, and educate them as to how it interacts with various antidepressants in different strengths. Instead, the Prescribing Information states that doses should NOT be adjusted for drug interactions when prescribing Abilify for depression–although elsewhere it warns that Abilify doses should be “at least” cut in half if combined with drugs such as Prozac and Paxil!
It made no sense—until I recalled the selling power of that “little baby dose” pitch, which sounds so reassuring to patients. It had almost worked with me; it made my fears seem a bit silly. It also reassures doctors that they don’t have to make complex choices about which antidepressant to use, in which dose. Just add Abilify and serve! Why worry about two (or five) little milligrams?
A drug that looks better from the outside?
Abilify is a stimulating or “activating” drug for the majority of people, although some feel sedated and slowed down. Five in the RxISK group took it with Wellbutrin, and two more just before or after trying Wellbutrin. Doctors may be using it as they use stimulants, when patients appear fatigued or slowed down and “activation” seems a good idea. Yet activation is a two-edged sword: welcome at times, but irritating or even agonizing in excess. It might look to the doctor like progress, even while the patient starts to feel nervous or agitated. I thought of those trials where doctors rated the patients more “improved” than the patients rated themselves. Perhaps Abilify looks better from the outside than it feels from the inside.
Abilify marketing records, released during court cases, suggest Bristol-Myers recognized this. (In 2007, they paid $515 million to settle charges alleging bribery and other shenanigans to promote Abilify for unapproved uses.)
The huge nursing home market, full of elderly patients with dementia and “difficult” behavior, was one Abilify sales reps coveted. The sales pitch they crafted invited staff to picture a new resident who sat hunched over, staring into space all day – supposedly due to depression, since antipsychotic drugs are officially off-limits for frail elders with dementia. Who wants to see that when they come to visit Mom on a Saturday? the reps asked. Wouldn’t we like to see her up and about, looking lively? The sales pitch worked; whether Mom felt better or worse in the long run, apparently, was not their concern.
A sales pitch with a drug attached
I was glad I had dodged Abilify, and a bit spooked to see how close I’d come to being taken in. To see the entire medical profession falling for it made me really scared—and angry. “Not really an antipsychotic?” Gimme a break. “Little baby doses?” Not really. “True happiness”? Good luck! My doctors’ best arguments turned out not even to be their own – just marketing pitches they’d absorbed without realizing it, possibly sold as Continuing Education. There might be a legitimate use for this drug somewhere, but we’d never find out with marketing in the saddle and medicine trailing behind. Everything, from the drug’s name to the “scientific” studies, seemed built around the sales pitch.
“I have seen many commercials about how drugs like Abilify can perk people right up,” one woman wrote to RxISK. “So I was not only disappointed and frightened by the results, but felt once again tricked and exploited by the big promises that drug companies make but never seem to keep.” Amen, sister.
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This is exceptional reporting.
Well done, Johanna.
Thanks Annie! I think this article just scratches the surface of what we can learn when people start sharing their experiences on RxISK. Even when the numbers are too small to make firm conclusions they can provide “signals” that others can follow up on.
Of the four people with Tardive Dyskinesia, all were women – and only one was under fifty. It could be there’s important differences between men and women, and/or older vs. younger people, as to how Abilify affects them. I’d certainly hope doctors would be more careful about giving large doses of any drug to post-menopausal women, especially if they’re of smallish build.
Another thing that grabbed me was that this “loss of interest in life” was linked to one definite and one possible suicide. Both were formerly passionate about making art: music in one case, creative writing in the other. Others mentioned this feeling as particularly horrible. We know that akathisia is a danger signal for suicide; should we regard people dropping out of activities that used to be their passion (whether art, astrophysics or football) as a red flag? At the least, I think doctors underestimate how much pain this causes.
The more reports we get, the more of these “signals” we can find …
As much as I support this website and its goals I can’t help but point out how clear the sampling bias is in the dataset. 4/34 of your sample were mortalities, 3 of which are reported as “confirmed suicides.” Here’s the trouble, people report on this website because they’ve been wronged or perceive they were wronged by a drug. I’m sure a lot of these are totally true, it’s just that if a non-scientifically minded person is reading this website I can totally see them thinking these side effects are more prevalent than they really are and then use this information to support a decision not to take meds, even if they are a part of the population who really may need an antipsychotic (ie it’d be a shame for a real psychotic person to see this post and then not take abilify/antipsychotic because of it, especially when these numbers are not even remotely representative to what the real percentage risk of side effects is).
That being said, I totally agree that akisthisia is a major problem w abilify and the data I’ve seen has this occurring in about 1/3 of patients, I regularly run into this problem with my patients and agree it happens about 1/3 of the time. I also agree that the effect size for depression is quite small and I do NOT use this drug as an adjunct for depression, ever.
I totally agree that this is not a “representative sample” of patients on Abilify. For the most part, people report to RxISK because they have complaints — and the more serious their complaints, the more likely they are to report. The same thing is true of the FDA’s database. However, we’d be making a mistake to think either one was “unscientific” or did not contain vitally useful information for that reason.
It’s just as wrong to think this information should not be shared with “a real psychotic person.” Have a look at the comments below from Ms. Muirhead, who has lived through psychotic episodes and has grown sons in the same position! They have a lot to teach the rest of us. They can and should be able to weigh up the pros and cons of taking a drug like Abilify, for how long, and in what kind of dose. Even someone who is temporarily totally disoriented should be able to put the decision, for the time being, in the hands of someone they’ve chosen to trust.
At any rate, it’s really nice to hear from a doctor who can recognize when a drug is not all it’s cracked up to be, and pay attention to what real-life patients experience. One-third getting akathisia — that’s no joke! Hope you’ll keep reading–and post a few reports too, or help patients do it if they want to.
Bob,
I have MDD/anxiety,chronic Neuropathic pain and MS. Taking Cymbalta 120 QD, Xanax 1 mg QID. Doc only has Abilify to offer. Have started/stopped many times. On 5 mg again, anxiety, energy, pain the same. Weight gain makes symptoms worse!
What would you suggest for me?
I want to start Wellbutrin and ditch Abilify.
I have a son who has been on Abilify for over 10yrs and has found the drug useful. He’s now is in his 30’s and during this time has often worked full-time. However he does experience agitation with it. At some points he was on smaller doses and even on one pill a week, under a psychiatrist, when living in the USA. It may be that an episode of mental distress a few years ago was exacerbated because he had completely come off Abilify about 6 months before. I think it is a difficult drug to come off completely.
I have two other sons who have experienced psychoses and been in psychiatric settings, on antipsychotics. My oldest son got off the drugs back in 1996, after about a year in the system, never has had another psychosis or any mental health difficulties. My youngest son had physical health issues which exacerbated his mental health issues, and subsequently had many years of different psych drugs and inpatient treatment, now has bipolar disorder diagnosis. Came off Haloperidol in summer of 2012, which had been forced into him. Tapered the drug with my support, under a psychiatrist, in Fife, Scotland. Been on no drugs since then, gradually recovering from human rights abuse in Feb12 in locked seclusion room of psych ward. He has occasional meetings with psychiatrist, every 6 months or so. No other mental health service support.
My middle son is fine about taking Abilify and thinks it works for him. My other two sons and I are more intolerant to antipsychotics, don’t want to swallow them. I was intolerant to Venlafaxine also, it gave me suicidal impulse and bone loss. Lithium did nothing for me except raise my blood pressure. I got off all the drugs in 2004, tapering them myself, had only been on them for 2yrs at most.
I have other female family members who have experienced psychoses and antipsychotic drug treatment, one of whom takes Clozapine and is productive, another made a complete recovery in the 1980’s. My mother was latterly on a Depixol injection, for over 20yrs until her death at age 68, in 1998. She functioned OK on the drug, on occasion working full-time, although I wanted better for her. My father had one episode of psychosis and psychiatric inpatient treatment that I know of.
Therefore in my family, through 3 generations, at least 8 of us that I know of experienced psychoses and psychiatric treatment, antipsychotic drugs, since mid 1950’s. 3 of us were OK about taking the drugs longer term, 5 of us weren’t.
For me it’s always been a matter of principle not to swallow the drugs voluntarily. I am non-conformist/non-compliant. However I always entered a psych ward voluntarily, on the 3 occasions I experienced psychosis. Twice after childbirth, latterly at the menopause. I was always either forcibly injected, in the 70’s and 80’s with Chlorpromazine, or coerced to swallow the Risperidone in 2002 when they detained me for 72hrs. The drug quickly took me out of a psychosis then depressed me. I do not normally experience depression and neither do my family. Psychosis is our “thing”. We don’t “hear voices”. Despite this some of us were given schizophrenia and schizoaffective disorder labels or diagnoses which remained in our “notes” even when recovered.
Thank you for this article, Joanna. I have to admit that your information about the “traffic jam” and intensification of Abilify’s dosage/levels made my hair stand up. I was prescribed Abilify while taking Prozac, Wellbutrin, Lamictal (a mood stabilizer), methylphenidate–and Seroquel (a whopping 600 mg). I was only on Abilify for 2-3 months. The worst side effect, for me, was word-searching, and how my ability to spell and type common words (e.g., potato, diagnose, synergy) went down the tubes. I’ve made my living for 30 years as a writer and researcher. When I told the prescriber (ostensibly the most progressive and open-minded of all the shrinks at the health organization) of my difficulties, and desire to find a different medication, he screamed–yes, screamed–at me: “Well, you’d better get used to it because you’re going to have to be on something like this for the rest of your life.”
he was wrong. A few months later–after being on psych meds (starting with Prozac) for more than 20 years, I successfully titrated off of all of the medication, and have been off of it for the last 4+ years.
I realize that your “study” population is a small one, but I think that so many of us don’t recognize the side effects of a medication, either because we can’t pinpoint when the problem started, or we think it’s just us, and not related to the medication. For example, I was in my late thirties when I started the psych meds, and was in my fifties when I got off of them. I used to wake up being quite stiff and achy and clumsy for the first couple of morning hours; I thought this was simply the result of aging. Then one day, maybe two weeks after letting go of the last medication– Lamictal –I was in the bathroom brushing my teeth before I realized I hadn’t had to lurch from bed to door jamb bent over like a crab that morning–and that the stiffness was side effect of that drug. My God.
And, of course, the final reason is that polypharmacy is increasingly the norm, and most of us don’t track side effects, nor are we encouraged to do so (and when we do, we too often get the types of responses from prescribes as I did)–or we are guilt-tripped and shamed into believing that any side effect is better than the risk of mental distress.
Thanks again.
I think I was on Abilify twice during my four years of psychiatric adventures, which began with a mania upon accidental Effexor withdrawal after a major abdominal surgery. (Nurses forgot to provide it.) I was an overnight bipolar when I got home and was no longer sedated by IV Dilauded. I eventually got the BP diag-NOOSE-is at age 49 after a pretty successful and still-promising career. The dx led to all the perversions of “treatment” that many here know all about.
The Abilify experience I can recall best was when I was only on Abilify. I was newly on it, taking about 25 mg/day as I recall, and could barely keep my head up. I was staffing a booth at a crafts show and I felt like I’d hadn’t slept for 2 or 3 nights. My whole body was begging to go to sleep, and I very much wanted to lie down. I was not physically agitated. My mind would not get with the program, though. It was burning with energy of some kind.
I’m only telling this here because I mentally articulated how I felt, and remember what I said to myself. I remember thinking “I would rather have my normal state of mind and body in a prison camp than be free and outside with friends on a beautiful day, feeling like this.” I double-checked to make sure I meant it, and I did.
I don’t endorse that preference for incarceration in the worst of conditions anymore. At the time, I’d already read plenty about Changi, the Gulags, and the Nazi camps and know it was an absurd thing to desire.
I’ve had the restless/agitated akathisia and found that preferable. I wish I could describe the crafts show day better, but all I have are shopworn adjectives like horrible, awful, and unbearable. I bore it and got all all drugs a couple years ago.
I wonder if suicide showed up in the Abilify clinical trials the way it did with Zyprexa (Eli Lilly managed to shove this “little detail” under the rug, and it was only discovered years later through a Freedom of Information Act request).
Had personal experience with the suicidal feelings aspect of Zyprexa, as my now deceased family member (dead from profound hyperglycemia from the drug) was admitted to the hospital three times to “stay safe” from suicidal thoughts while taking the drug.
Of course, these were never attributed to the drug itself, only to “the condition.”
Excellent reporting here from the RxISK reports. Such profiles can shape the real life truth of the effects of taking such drugs as these, as opposed to brief clinical trials in which the “good” effects are touted, while the risks and dangers are hidden.
Johanna You’r work is great. Are you a journalist?? Soon to Be?? Or just research this stuff for Curious people??? Keep writing. 🙂
I have developed a movement disorder. Nobody is helping me. My GP thinks my symptoms are an illness, so if i have TD it is just another symptom of my illness. What can you do when faced with this?
My one and only son who is now 22 years old was institutionalized for the 5th time in the last 2 n a half years and diagnosed with schizophrenia with each time hospitalized for No more than 1 month. He refused taking his medication a year n a half ago because it made him too drowsy to function with normal daily activities. Recently at the begining of this year he started falling back into a paranormal feeling of someone trying to inter his head and control him. Hearing voices and depriving himself of sleep by playing his game system. It has now led to the point of being so disrespectful to both my husband and myself and literally making myself feel scared of him because of threats. I now have deadbolt locks on my bedroom and bathroom doors. He was treated at a center that was only allowed to keep patients for No longer than 14 days. Which BTW my husband and I had to get custody court orders and force him to get help again and to be medicated. He was given Abilify of10mg per day and sent home after 7 days. I’m concerned of him hurting himself or others sexually because of reading the sexuality intense side effect feelings he could have from taking Abilify. Let’s face it..he is a 22yr old make and we live in a collage town. He has never been in trouble with the law or even jailed for anything. But he is sexually active. Someone please help me understand all this.
Great article. I have been on abilify injection of 400 mg every three weeks against my will for a year and a half . The side effects are more like “effects” and have impacted my life in such a way I feel trapped and alone. Physically I feel broken, emotionally oppressed and mentally fogged. My arm and tounge twitch. My doctor dosnt care when I say these things. I’m slowly comming off of it because I finally got de certified from this scary oppressive system. I wish everyone who’s struggling with this drug and system to stay strong, I know it can so brutal. Thanks for the article.
Hi Ellie
So so bad this has happened to you & I am very sorry.
Just make sure you reduce this drug ever so slowly about 10% per month is a good rule. It’s a horrid one to quit.
My son reduced over a 2 week period (psych recommended) & relapsed two weeks after stopping. I’ve since learned this was way too quickly & I believe the relapse was caused by withdrawal from Abilify.
I’m sending positive thoughts your way.
Sharon x
I have tried 4 times to get off of Abilify. The last time I weaned over 8 months and the withdraw came on 1 week after I was off of it completely. The anxiety was so bad, I went back on. I have no other side effect except 40 extra pounds, but I do want to get off of it completely. I understand that it takes a long period of time to do this, taking into account that withdraw comes after completely taking the drug and then there is still the 3/4 life, 1/2 life and 1/4 life to deal with in the body. I guess all in all it will take up to 2 years to get off of it.
Hello,
yes being forced to take a medication against your will is something I’m battling. And yes…I have told these doctors numerous times it’s not the right med. Hopefully god will help me out or someone.
Very interesting article (my son has schizophrenia). I am a retired nurse and worked for a number of years in clinical research and drug trials (rheumatoid arthritis). I can tell you that most Phase IV trials (on patients) last about six weeks, which is quite ridiculous and irresponsible considering they are testing drugs that are used for years at a time. You might remember Vioxx which is an excellent example – wonderful for six weeks then proceeded to kill people with heart attacks. There is quite a move among a few psychiatrists and psychologists in Britain, Europe and the US (I am in Australia) following a Dutch study, suggesting that antipsychotics should only be used in minimum doses and not for very long, as it seems that in the long term people not on drugs do better overall than those permanently on them. My son has been on Risperdal for 12 years, but is being slowly weaned off and is coming alive again. Coming off has to be done incredibly slowly with all these meds (over about a year) to avoid bad withdrawal effects. Good luck to all of you.
This is a great article even though it’s scary to me. I was diagnosed with bipolar 1 in 2004. The first thing the doctor did was to start me on Abilify and Lamictal. I didn’t know enough back then to even know the side effects. She just wrote prescriptions and I took them. This seemed to help until a couple of years ago I developed tardive dyskinesia. The doctor wanted me to keep taking Abilify and even increased my dosage! That won’t help with the TD will it? Should I even be taking an antipsychotic? I’ve been researching Abilify and brain damage. I have lost all short term memory and I’m really scared I might be getting Alzheimer’s. Also, I’ve gained 60 pounds which really is not helping with the depression. Should I slowly taper off Abilify? I have no trust in my psychiatrist. All she does is push pills on me and they make everything worse. Should I even tell my doctor I’m doing it? I’m afraid she might put me in the hospital because she doesn’t even listen to all my concerns. I think a new psychiatrist will be in my future.
After a reactive psychosis I got prescribed Resperidone and but after 2 months was switched to Abilify which I took for about 5 months.
The drug made me numb and emotionless (had a lot of suicide thoughts) and my eyesight got suddenly worse (presbyopia). Every time I lowered the dose I felt a bit better, then finally I managed to wean myself off, after finally getting a liquid solution.
After quitting I stared feeling normal again.
All those psych drugs are just poison used by people with no real understanding how they actually work (based only on theories).
Just my 2cents.
Similar experience with my son psychotic episode first one prescribed amblify .. no energy no drive loss of interest in any activity..I want to stop the meds it’s only been a month .. I’m scared that psychosis will return but he’s wasting away and seems more like a zombie
I too, get very restless like i have to keep doing things, and sitting down don’t really feel relaxing to me. But what i find that helps is a few things. Magnesium citrate pills, calcium pills, chamomile pills or tea. Tea can be faster at working. And a light to medium dose of klonopin. And i stay away from caffeine. And i was taking B complex, which helps with depression too, but too much might add to the restlessness. Not sure on that one really. Just guessing. But definitely the magnesium and chamomile helps a lot. Try it out.
yes, thank-you for figuring that out. Because the restlessness is so bad sometimes, and your muscles are stiff and aching but it’s like there is nothing to do but feel that.
Thank you Johanna,
Thank you for taking the time to learn so much about this drug. My husband is currently taking this for schizoaffective disorder – and it has definitely made his violent behavior and foul moods just…..disappear. We initially started him in Invega after a ten day hospitalization, but that was too sedating and that was no life at all for him, he was miserable.
With the Abilify, he truly does wake up in a good mood, and is loving towards our children. He has been on this medication at 5mg per day for the last two months. Our family is so impressed and happy at how kind and funny he is once again. He is able to be caretaker for our children again – bringing them to school and picking them up. But he still feels weak, and has trouble doing things like basic push ups. He wants to try to discontinue this medication. Like starting with an every other day doing. And so we tried discontinuing it today for one day….already I am seeing his irritability and spacing out returning – I’m nervous about his anger and violence coming back. I’m not sure he realizes how obvious it is – I think that he believes he’s doing a good job covering up his irritability and he wants to continue weaning off the Abilify. I think I’m going to try to urge him to continue this medication, after I let him try halting the dose for a week or two – so he feels like I gave it a fair shot. Hopefully he doesn’t relapse by then!
Anyway I just wanted to add my two cents into the pot. I wouldn’t want to be on this medication, but for us it has been better than Invega, and it’s a much better alternative to psychotic violence!
I’m not sure about Abilify yet. I’ve been on it for a month and a half and at first it seemed to really help motivate me. I’m taking it with prozac and lamotrigine and I seem to have lost interest in things that used to fascinate me. The world seems blah—as if the highs have been leveled off, and the lows are still there. It seems like I’ve tried a number of antidepressant drugs and not had results, really. The Lamotrigine I believe does help. As for the prozac, I think it adds to the blah-ness. There has also been weight gain. Taking 2 mg/day…..I wonder just how long it will take to taper off. There’s only so many times I can break these tiny little pills.
I can say without a doubt that Abilify made my 40 year old son’s life hugely better. He has schizophrenia, major delusions and previously jumped off an overpass and has been hospitalized over a dozen times. To say that he is very ill is an understatement.
A team of psychiatrists at the State Hospital had him for five months and worked him up to 50mg/day or Abilify. He was discharged with few side effects and the general public could not tell that he had a major mental disability. He stayed on Abilify longer than any other anti-psychotic he had previously been on and his quality of life was immensely improved. I have to disagree with the slant presented in these arguments.
Yeah….umm take it yourself-then tell us how you feel -just because he is easier for you to handle doesn’t mean he feels better inside he probably feels nothing, like being alive but dead and the side effects are horrifying
As someone who actually suffers from bipolar 1 disorder with psychotic features, Abilify has saved my life, no more suicidal ideations, psychosis, depression, or mania. So not sure about this article…
Abilify (aripiprazole) has completely ruined my life.Even months after stopping my brain and body are seriously damaged.
I used to love sports but now I can’t even run.I was young fit and healthy before abilify but now my body is very weak, coordination very poor and muscles stay weak even if I exercise a lot.I cant play piano like I used to for the last 15 years and my memory and cognition are poor.
And I was a high achiever many times in my young life,with high intelligence.
Human rights are completely trampled on here and the psychiatrists dont care at all.
Why do they ignore so much neuroscience and neurology? About movement and cognition and meaning.
They cant measure anything at all in a patient (dopamine serotonin) so the behavioral model/diagnosis is ridiculous.
They set the rates dangerously low and you cant move properly but they still ignore the facts.
Any of these medications /antipsychotics are dangerous and in breach of fundamental human rights.
I dont know how they get away with it.
If anyone has any idea how to recover after the damage they have done please email me : itwasinshortatime@yahoo.com
Bernard
I was prescribed Abilify, as well as Seroquel where I was diagnosed with Autism Spectrum Disorder and misdiagnosed with a “mood disorder,” which they thought was bipolar.. I was also put on lithium and beta blockers. I entered already diagnosed with ADHD, having prior success on stimulants. They knew I had ADHD, but were of the impression back then in the early 2000’s that ADHD just went away in teens.. They seemed more interested in my ASD, and trying to diagnose me with a mood disorder for my present anger, lack of interest in taking care of myself, socializing, video game addiction (which they thought was just my autistic interest that I focused on.. No, I was escaping and hyperfocusing on an escape.)
I also have Tourette’s (which they missed, because I was having no visible tics at the time my throat clearing had a several year break, and my echolalia had regressed to only a mental manifestation, which they misdiagnosed as some trait of ASD,) They ignored the mention of Tourette’s, said it had probably disappeared much like ADHD (which it hadn’t,) I have actually been re-diagnosed.. now..
But back then, they put me on the antipsychotics.. After Abilify came the akathisia, and the return of my Tourette’s, which are permanent and chronic now by the way, thanks to Abilify.. My anger intensified even MORE, and never went back to my normal baseline temperament, which was bad to begin with..
I started self medicating with stimulants later, which helped A LOT, but did not stop the akathisia or tourette’s.. What did finally wind up stopping those, was methadone.. The first time I noticed that opiates stopped the akathisia was when I was prescribed opioid painkillers when I had my wisdom teeth removed at close to 19..
The akathisia that struck me after Ability.. It’s FULL BODY… You don’t even want to know how bad it is when I don’t take my methadone.. I was warned about that before I even started using opiates to medicate the akathisia to begin with, but since it was so chronic and debilitating without them and I was heading for suicide, I said F it and started gobbling those pills.. Boy was I happy when I finally got my first actual nights sleep in years.
Now I have a doctor that seems informed, and she wants to put me back on stimulants.. I am so happy, because I already know that being on stimulants while on the methadone makes me feel normal, regular, and happy.. My family says I act like a totally different person when I medicate, like the person they always knew I could be..
It sucks that my brain has been so ruined by antipsychotics, I feel like if I had just been put on stimulants in the first place, and doctors weren’t so afraid of prescribing them to possible ADHD patients, this wouldn’t happen.. So many people get put on antipsychotics because they present some depression or anger problems or emotional sensitivity, and it just BREAKS them!!!
I am thinking of suing the doctor that put me on antipsychotics….
Abilify is like every other drug out there. It’s going to work for some people. It’s going to not work for others. I had an older son that was on it at one point and it didn’t work out well because they couldn’t keep consistent dosing between back and forth between households. My youngest son who was adopted and his birth mother has schizophrenia narcissism we had severe ADHD a diagnosis along with disruptive mood disorder. Things got so bad we could not control with methylphenidate. We finally tried to abilify in May and we finally have are almost perfect little boy. He’s gone being from being described as out of control and heaven, anger, anxiety and almost panic attacks at frustration over not being able to do things to being calm. Easygoing the most organized kid that they’ve ever seen described in the classroom now. So for us in our situation it has been a godsend. We’ve started out small on the dosing and moved up very gradually which may need to be adjusted as he grows.
Families and doctors need to both be involved in the process and clearly define the criteria and expectations of what they’re trying to accomplish. If you just do spaghetti against the wall, your success may be harder to quantify.
Abilify saved my life. I find this report very bias and people are only reporting here to you due to negitive side affects that they don’t even know if abilify caused them. Abilify has saved many lives. That’s clear.
I started Abilify On 10/18/22. I had been seen by my heart Dr. the 10/14/22 and my blood pressure and heart rate was good. My heart rate was 72 which is normal. In the last couple of weeks my Bp is up and my heart rate is from 95 to 110. What changed! The Abilify! It was perscribed by my family doctor. I suffer from depression and am already on Pristiq. I believe the Abilify is the reason. I couldn’t understand why everything changed so quickly after I had seen my heart Dr. now I know. Can I safely stop taking this drug since I’ve not been on but about three weeks?
No one can offer you clinical advice without knowing your history in detail and being able to work with you. It would also be good to know your doctor and how sensible s/he is. So you should never take online advice without a lot of thought but equally when it comes to psychotropic drugs you should be very skeptical of the advice you might get from specialists and family doctors and the standard advice to consult your doctor before stopping your drug or doing anything can be lethal.
You are in a difficult situation and on your own. You need to apply common sense. My hunch is based on what you have written here with nothing else to go on – this hunch might change completely with more to go on – is you can and should stop, assuming you have not been put on a high dose. If the dose is high you should clearly taper.
David Healy
Abilify ruined my life. I developed side effects such as over 100 pound weight gain, high blood pressure, borderline diabetes, first degree heart block, anxiety, critical slow thinking, including but not limited to cognitive problems. My doctor lowered my dose to 300 mg, but I still continued with severe side effects. I have been forced against my will by a Court Order issued by mental health Court judges in the Rhode Island District Court. The reason for forcing me to take Abilify is to discredit my valid Complaints against Law Enforcement who are targeting me to cause me harm. The R.I. District Court judges and my doctors are conspiring with Law Enforcement to cover up their Crimes Against Humanity. My story is tragic and I hope no one else has to endure what I have endured. You can google my name for further details- Lori A. Zarlenga
So here I am about 12 hours from the most important doctor appointment of my life. Up at 3 am thinking about how to convince my new doctor to take me off of a 400 mg abilify injection taken monthly. I’ve had all mentioned side effects except suicide. Also severe incontinence and constipation to the point of bleeding. It’s been 2 years. One of those was spent trying to convince the doctors of the program I’m in that I shouldn’t be on the shot anymore. I’ve been afraid that if I go against the doctors wishes they will resent me and actively sabotage me. Well…. Too late for that. I told me doctor about incontinence being worse. I told my doctor about anger problems. I told my doctor about ticks and twitching. I told my doctor about depersonalization. Still on the shot. I will try to reason with this doctor but I haven’t had the shot in over 30 days and I feel better than I have in years. They have made me doubt myself for so long that it has had a mental and emotional impact in that alone. That along with the side effects from the shot they’ll be lucky if I even stay in their program.
You raise a valid point about low dose use, but it’s important to remember that nearly all liver metabolized drugs are processed with that enzyme. The way you reported it, it sounds like it’s only antidepressants, but basically this is a problem whenever you take any 2 liver metabolized drugs. So most of use are walking around with this “problem” if we take a few chronic medications.
Hello,
I just got prescribed Abilify recently. I heard that it is really hard to treat schizophrenia the non-medication way. So I thought Abilify would be a great start. Olanzapine I was perscribed before but my psychiatrist said it is too sedating. Is Abilify really the best way to go about this? And if I do come across these dangerous symptoms, is best case scenario just to be transparent and working with my psychiatrist?
Any advice or input is much appreciated!
Have a great day 😀
I have been taking Abilify for a couple months now (10 mg). It has helped me with anxiety more than anything, but I have noticed a strange effect that I haven’t really seen anyone else mention. Throughout the day I have severe emotional ups and downs that can last anywhere from seconds to minutes. Has anyone else noticed this side effect? I’m starting to feel hopeless, like I’m the only one experiencing this and I’m not sure if I should try to switch to something else or stop taking it altogether.
Yes I’ve noticed this as well.
Please email me. Im being forced to get Abilify injections. Mind is messed up. Feeling suicidal and angry agitated.