Abilify from the Inside Out

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April 20, 2015 | 14 Comments

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  1. 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 …

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. Johanna You’r work is great. Are you a journalist?? Soon to Be?? Or just research this stuff for Curious people??? Keep writing. 🙂

  8. 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?

  9. 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.

  10. 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

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