Ding.

After three of my Drs finally consulted together and deemed Abilify the evil, weight-gain drug I always knew it was, with my psychiatrist’s blessing I started to decrease my dose.  I thought about not writing about my withdrawal experience, but hopefully this post may provide to some a bit of the first-hand info I was looking for a few months back.

I complain about Abilify a lot, but first let me say the med isn’t entirely spawn from the Devil.  It definitely has an important place in my history.  It was wonderful for stopping my mild psychosis cold turkey and keeping me on a stable plane when I needed it the most.

The trouble with Abilify – as with pretty much all the drugs in the anti-psychotic class – is it makes you gain weight.  Sometimes a lot of weight.  And when you’re already battling self-esteem issues and have some heavyweight health issues in your family tree, that’s not at all desirable. After 32 pounds I said, “Enough.”  It also makes you feel medicated.  Very medicated.  My memory is practically nonexistent, so that was another driver for wanting off of this med.

Several people warned me that going off of Abilify wasn’t going to be easy.  They are right.  Although it took a relatively small dose to keep me stable (7.5 mg), that translates to even small incremental dosing changes having big impacts.  My personal experience is that a 2.5 mg drop in dose resulted in confusion, motion sickness, vision disturbances and generally feeling pretty horrible.  I was on the lower dose for only four days and had to retreat back to 7.5 mg and regroup.  Be forewarned, if you have something important (like visitors coming) or stressful (be it good or bad stress) then it is not the time to try to titer down.

One positive effect was the water weight did begin to drop.  At the rate of one pound per day, even though I was keeping up my liquid consumption.  Just goes to show that my muffin face is not the product of too many baked goods ( 🙂 ).

After consulting with my psychiatrist, we have agreed on the every-other-day plan of attack.  That means 7.5 mg one day, 5 mg the next, lather-rinse-repeat for two weeks.  Then we’ll reassess.

The moral of the story is if you’re trying to wean off of Abilify, be patient and vigilant for any unusual side effects.  And, be willing to adjust your dose up again if things aren’t going your way.

Round 2 began yesterday evening.  Stay tuned.  Hopefully the every-other-day angle will be more successful.

80 thoughts on “Abilify Withdrawal – Round 1

  1. Oh, Vivien, I so hate this for you. I know you’re going to give this your best shot, and you sound like you’re looking at this with clear eyes and realistic expectations. All good. This will be a long process, so please keep writing about it. Let us all support you.

    1. Thanks so much. I was thinking about your comment today when we booked our family vacation. It is going to be a long process, so if I’m not weaned off by Sept 1, that is just going to have to be OK. Don’t be so hard on yourself, right? LOL

  2. Good luck. I think it’s interesting to see how different people respond to different meds. I took Abilify for 2-3 weeks and it did nothing for me. Except give me akathisia. Which to me was more hellish than depression . . .

  3. Good luck with the weaning approach, I hope it works for you! I’ll be interested to see how it goes, as it might be an approach applicable to other meds too. 🙂

  4. This is the first useful article I’ve read on getting off Abilify. Thank you for posting it. I’ve been off Abilify for about 2 weeks and the withdrawl symptoms are just appearing now. Restless legs, insomnia, irritability, anxiety. None of it is unbearable at this point, but it sucks. I may have gone off it too quickly. Was at 5 mg daily for about 6.5 years. Tapered to 2.5 mg daily for two weeks. Then I stopped. This is all being supervised my my psychiatrist. I’ll be happy to tough it out if it eventually goes away. If it does not, I’m going to just get back on it and stay on it indefinitely. What do you think? Ed

    1. It’s tough, I’ll tell ya. It took me eight months and two bouts with mild psychosis to kick this stuff. For the last ~two weeks I had to take Xanax and go to bed. But, it was very much worth it in the end. Every person I know remarked on how much more alert and how much more like a person I am without this drug.

      It’s not impossible, just incredibly hard for some. When the side effects of weaning off became too much, my doc would jack my dose up just a bit, let me settle, and then we would continue the titering down. It’s a lot of work, I won’t lie.

      Let me know how you’re getting on. Good Luck!!!

      1. Hi Manic,

        I am still so thankful for your story about Abilify tapering! Today is Nov. 18 and I tapered down from 0.5mg to 0.4 mg 4 days ago. I started my taper in June and started at 2mg. I am tapering by 0.1mg every 3 -4 weeks now.

        Previously I hadn’t noticed any withdrawal symptoms. But last night I tossed and turned all night and today I have a general feeling of malaise. My hands are also shakey. I am assuming these are withdrawal symptoms. I don’t feel horrible, but I do feel uncomfortable and I don’t like how I feel! I also feel mildly irritable.

        Maybe I need to go up today to 0.5 mg just to see if that makes me feel better. This is a long road and it sucks. My Pdoc is not helping me taper. I am doing it after reading a book written by a Psychiatrist on how to taper off meds.

        I have been having a big problem with extreme fatigue and wondered if you experienced that symptom.. I am still hanging in there and am definitely going to get off of this nasty medication!

        1. Melissa – how is it going? Were you able to quit the Abilify? Yes, I had all of the symptoms you described. It’s a crummy ride, isn’t it? Let me know how you’re doing. Vivien

    2. So your history with abilify is exactly like my own. I have been on it for about 7 years at 5 mgs. My ins. Will not cover it now. I have tried everything to try and get it paid for and since I am on Medicare forget it. The elderly get nothing. So I have spent the last 2 weeks at 2.5 mgs and after that I will be withdrawing and it is hell. I did it once before and will have to go to hospital this time.

  5. Hi Manic,

    I have started the tapering on Abilify. I purchased the liquid so that I could wean down on much lower doses. I was on 2mg and have weaned down to 1.8mg that I have currently been on for the past week. I have had weird feelings the last 2 days. Apathy and mild anxiety. I see it possibly taking up to a year to wean off of this medication. I work full time and cannot tolerate trying to taper to quickly.

    How long did it take you to taper off of Abilify and how have you been feeling since. How long have you been off of it now? I am terrified of this apathy and fear it won’t go away.

    thanks,

    Melissa

    1. Hi, Melissa. Thanks for commenting. Abilify…ugh. So…it took me a total of eight months to wean off. I had three false starts during that time. I don’t work right now, so I could handle more withdrawal symptoms than if I’d had to hold down a job. As you said, it probably would have taken over a year if I were working. But, that’s OK. When I did the taper, I stayed on the same dose sometimes up to three weeks. Then, I would do one day on the lower dose, one day on the higher dose for a few weeks at a time. Talk about baby steps. The last two weeks were the hardest. The last week I just retired to the couch and took my alprazolam twice a day if I needed it. Unfortunately, this was the only method to quit Abilify that worked for me. And unfortunately, the first two times I tried and it was too quickly, I was thrown into a a mild psychosis.

      Now I’m not a doc, but the more research I do and the more I talk to professionals, the more studies I find documenting how hard it is to kick this stuff and the adverse affects that can happen while you’re trying to do it. So, don’t discount any strange feelings you have while weaning – if you don’t think it’s normal, tell your doc.

      After I finally quit Abilify, my life became so much better. My cognition is much better, I can read and comprehend much better, I can write, my depth perception returned to normal, I no longer have any issues with agoraphobia and I’m not nearly as anxious anymore. Sigh!

      Good luck, Melissa! Go slow and talk with your doc often to make sure your withdrawal isn’t producing any serious side effects. Come back and let me know when you’re ‘clean.’ LOL – be well!

      1. Hi Manic,

        I just wanted to get back with you and let you know how things are going. I am now on day 4 of 0.9mg of Abilify. Fortunately I have not been experiencing any real withdrawal symptoms. I recently have started tapering by 0.1mg every 2-3 weeks. Using the liquid makes it very easy to titrate the dose. I will continue to let you know how I am doing.

        Thanks so much for your encouragement!

        Melissa

        1. Hi, Melissa! I’ve been offline for a few months – how are things going? I hope you are doing well and are off the Abilify. Please drop me a line and let me know how you are doing.
          Vivien

      2. Hi Manic,
        I am still not quite off Abilify. I am down to 0.2mg yeah! Keeping the dose there for now because I am in the process of transitioning from the AD Viibryd to Zoloft. Once I become stable on Zoloft, I will start the weaning process again. Viibryd was causing me massive weight gain as well as the dreaded sexual side effects. My goal is once off of Abilify for a while then to very slowly taper off of the Zoloft. I have been on psychotrophic meds for 25 years for depression and had bought into the medical model that I have a so called chemical imbalance and will need meds the rest of my life. I no longer believe that and am tired of the lethargy and other side effects that these medications bring. I am tired of being numb! Hope that you are well

        1. Hi, Melissa. Woo hoo! PROGRESS!! It sounds like you’re on the right track and feeling much better these days. That’s just great! As I read the last part of your response regarding chemical imbalance (or not), for some reason a light bulb finally went on. There is a great blog by the lovely Dee Dee called http://disorderlychickadee.wordpress.com. After years of battling against what she was told was bipolar disorder, it turns out the culprit is an endocrine system imbalance. I wonder if reading her posts might be of benefit? I find her to be very no-nonsense and inspirational since she refused to be content with a dx that made no sense to her. Check her out – just a thought. In any case it’s great to hear you keep tapering off the Abilify and have a long-term goal. Good Luck!!! Please let me know how it all goes!

  6. Thank you so much for writing about this experience withdrawing from Abilify. I’m trying to do the same and it has been tough–6 weeks worth of struggles so far. I was on 5mg for at least 3 years and gained 30 pounds. We started alternating days of 2.5 and 5 and that was okay. Then went to 2.5 and man did a deep depression come on like spades. I’m also doing TMS while tapering off and we’ve changed my Zoloft to Pristiq. The TMS is a miracle; Pristiq seems good to me so far. I’ve been doing 3 days of 2.5 and then a 5 for about 3 weeks now and yesterday I went to 4 days of 2.5 and the irritability kicked in, so I took a 5 today. Seems like I’ll need to do this for awhile–4 days of 2.5 and then a 5 and see how I do. Never imagined it would take this long or be this hard. I am so sorry you had to go through 8 months of this! But writing about your journey inspires me to stick with it and to know that this is a very real struggle. And I’m not alone in going through this. Thanks.

    1. Hi, rjfjc – thanks so much for commenting. I’m sorry to hear you’re also having such a hard time quitting the med. It was a hard slog, but very much worth it in the end. The only thing that worked for me was doing a low dose for a day, higher dose for the next. I did this for two weeks and then took the low dose only for two weeks. After that, lower dose one day, higher dose the next, etc etc. Frustrating, but the time it takes for any psychiatric med to kick in or be weaned off of is pretty slow. Everyone is different, just listen to what your body tells you.

      You are definitely NOT alone in this! I wish you the very best and if you have the time, post back in the future and let me know how you’re getting on. Be well!

      1. Well, I did get from 5mg to 2.5 over a period of about three months. Now I’m trying to get off the med. Did a few 4 days of 2.5 and then a day without and I think I’m ready to go down to 3 days of 2.5 and then a day without. A slow slog, but I’m glad to be doing it and looking forward to being off the Abilify completely. Thanks for your encouragement!

        1. YAY!! I hope you’re starting to feel better already! Yup, it’s slow. But WORTH IT! Are you having any interesting withdrawal experiences or is your body coping OK?

    2. Omg where were u guys 3 weeks ago I quit 10 mg of abilify cold turkey and have been having horrible side effects. Insomina muscle jerks headache depression crying all the time. I refuse to start back on it what can I take to ease this

  7. I’m so happy to read other stories about people who are sharing some of the same struggles and what to expect etc. I’ve been trying to get off abilify mainly because of the weight gain and I quit cold turkey. I was only on 2 mg and once I stopped taking the meds I went into a SERIOUS DEPRESSION and began to just be overwhelmed in sadness, severe lack of energy and just overall felt helpless and so very sad. I decided to go back to the Abilify and take half of my dose and try to ween off it this way. I am feeling better….just not the same and the sadness and depression is horrible. Does it ever go away? I’m starting a new job and just don’t feel like the same human anymore….

    1. Hi, Cari. Ah, yes – the weight gain!! Horrible. It was a large part of the reason I stopped taking the med. I tried cold turkey too and failed miserably (enter mild psychosis). The only thing that worked for me was the ‘drop the dose s-l-o-w-l-y’ method. Personally (and I’ve spoken to a lot of other people who feel this way, too), I feel a LOT better being off that stuff. I actually have cognitive abilities again! LOL. Work with your doc as closely as you can and never forget that what’s most likely making you feel like a foreigner to yourself is getting off the med. I’m not a doc, but there you go.

      Good luck with your new job, too! If you have time, post back in the future and let me know how you feel after you’re off the med 😉

  8. Hello From Australia
    Thanks for your diary, Its very encouraging. We are weaning our 20 year old Autistic Son off this wretched medication and are now almost 11 weeks since his last dose.
    His weight reduction has been remarkable, though disturbing as he eats then purges almost immediately, hence the drop in weight has occurred in tandem.
    The development of tardive-diskensia has been a horrible side-effect as has his self harm and destruction of property…he reminds me of a Junkie coming off,
    Your eight month odyssey is rather confronting as living with him is hell, but we know it is the right thing to do.
    Any advice you can give or/and pointers to coping strategies would be helpful.
    regards
    Tim

    1. Hi, Tim
      When I put my adventures with Abilify out there, I had no idea it would actually be useful. Thanks for letting me know it’s made a difference.

      Your poor son certainly has seen the worst side of this med. I never had tardive diskinesia but have seen people who have – awful. Since he is 11 weeks post-med have the symptoms subsided at all? Your comparison of coming off Abilify to a junkie trying to get clean is so on target, it’s frightening. That thought crossed my mind more than once, too. If I may ask, did the doc prescribe Abilify for a reason associated with the Autism?

      This is a horrible time, I know, but there are many of us who have quit this drug and have successfully recovered from the nastiness it caused. Personally I dropped most of the weight like a stone/like your son (except for those few pounds caused by living in a country with great bread and awesome pastry!) and I feel normal again. The coping strategy I used was when I felt horrible, I kept telling myself it was the medication (it’s the med, it’s the med, it’s the med) making my life hell. When I was in the home-stretch, I sat myself on the couch, took alprazolam on the really bad days and didn’t put an pressure on myself to do anything but ‘get clean.’ (I watched a lot of mindless shows on E! Entertainment, I can tell you!)

      I’m sure your family is having such a hard time watching your son go through this. Keep the faith! Don’t be afraid if he has to go back on a small does to smooth out the withdrawal symptoms for a bit and then start to wean again. And, as I’m sure you do, let him know you love him and this WILL end.

      My heart goes out to you and yours. GOOD LUCK – please tell your son I send my regards. Stay strong!

      1. Hi there
        Thanks for the reply and for the encouragement. Its a hideous experience and if I could bear it for him I would to save him the hell.
        There is so little guidance on how to withdraw its an utter scandal and in my experience of witnessing Doctors prescribe the full gamut of meds to my Son across the past five years with hardly a pause in their chat, I wonder about the merits of their credo of “do no harm”. An ethical consideration of the supposed benefits would surely warrant the consideration of the flip side of prescribing a miracle pill. They would surely must be aware of the Newtonian law of physics that unambiguously tells us that all actions have opposite reactions- these meds should surely be labelled with a warning that their use can provoke such.
        Take care and thanks again for the blog, the response and for being there…”so few, so few and yet so priceless these words of torment expressed for all to see. In their utterance they are steeled from endeavour to cease the fractured spree, of potions rich in sedative compound for deep within their resonance abounds and tears the soul and ravages the heart”…anon

  9. I’m glad to see other people have had problems too. My psychiatrist put me on a 3 week trial of the 1mg dose of Abilify and I’ve hated it. I couldn’t tell much of a difference on it other than sleeplessness, jitteriness, twitchiness, and some minor muscle spasms and tremors in my hands. I called my doctor when I ran out of the sample to let her know that I didn’t want to take it anymore but that I definitely needed something else to replace it. That was a week ago and I’m having some problems, mainly because they won’t call me back like they promise. I’m feeling more anxious than ever and more jittery. My grandmother passed away about the same time that I ran out of my Abilify and now the breath stealing depression is back. It’s amazing how it felt like it wasn’t doing anything at the time and how much I’m struggling without it now. I didn’t notice any weight gain in that brief period of time, but then again, my GP had me on Phentermine for weight loss during that time, which has also run out. Both doctors were aware of the 2 different medicines and deemed it ok. I think that coming off of both of them around the same time, and during the death of my grandmother of all things, has made the withdrawal for both even worse. I feel like crap. I’m depressed, I can’t concentrate at work, I’m exhausted feeling and I keep alternating from feeling really cold to really hot. Honestly though, at 1mg daily doses for 3 weeks, is it normal for me to be having these kinds of problems from being off of it?

    1. Hi, Erin: I’ve been offline for a while – how are you doing these days? Have you been able to find a doc to help you find a replacement for the Abilify? I hope life has settled down and you’re doing well.

  10. Just curious — how did you know the weight gain was of water? My son is coming off this med under doctor’s care after 12 months and 20 lb. weight gain. He says he feels thinner already (we’re at 1.5 weeks). Thanks so much for posting about your experience!

    1. Hi, Kathy. The weight gain was both water and fat. The first week I lost +/- 6 pounds and then the fat started to drop off. Ultimately I lost 17 lbs. Now I’m still trying to drop the weight I gained when on Wellbutrin. 😉

  11. Manic,

    It was good to hear from you again. Thanks for the website, I recently read something written by that author!

    Last night was first night to taper from 0.2mg to 0.15mg. Usually takes me about 5 days to feel the results of the taper. Can’t wait to totally be free of this drug. My psych nurse practioner says a lot of her patients can’t get off Abilify after they have tapered to 1mg. I know she things that I am weird for tapering so slowly. These practioners that prescribe this crap have no idea what it is like to take this crap or to taper off of it.

    I was just wondering how you are doing now and if you are currently taking any medications.

    1. Hey, Melissa!

      How are things going with you? How is the taper going?

      I know this is impossible, but if every doc who prescribes this crap could experience the effects instead of just enjoying the kickbacks from the drug companies… Oh, don’t get me started.

      I am on meds these days. I’ve made peace with the fact I cannot live without them. There are two anti-seizure meds, one anti-anxiety and one sleeping aid in the cocktail. It’s taken 3.5 years and two hospitalizations, but this is the med-mix for me.

      Pls let me know how you are 🙂

      1. Thanks for the reply. I have now tapered down to .1mg of Abilify. I am having some depression issues, but I don’t think it is related to the taper. Over the past 2 weeks I had to take Ultram for my interstitial cystitis pain. The pain is gone now and I have quit taking the pain pills, but discontinuing Ultram can cause depression temporarily. I am currently on 50mg of Zoloft and thinking I might have to bump it up to 100mg for now. I have also had a lot of personal stressors over the past several months that have been weighing on me. Depression sucks! I wouldn’t wish it on my worst enemy. I still would like to be med free some day. That is my goal. I know though that I will never take Abilify again, once I am off! Viibryd is another evil! It is marketed as not causing weight gain or sexual side effects! What a lie! I gained almost 30 pounds on it, it increased my appetite to the point that I never felt full. It also effected me sexually to the point of feeling totally numb from the waist down!

        I am glad you found your cocktail. Maybe I’ll find mine! Glad you are well. I will continue to keep in touch. I plan to stay on 0.1mg of Abilify for several more weeks. Then I will go to 0.05mg for a couple of weeks and then I will be off!

  12. I was on 20mg of Abilify a day, I have cut it down to 10mg for two days. Last night I hardly slept and I have been crying all day today. I am doing this without my doctor knowing because I know he would be against it. I will stay on 10mg for a month and then halve it again. I know maybe this is a bit drastic but I am convinced Abilify at such a high dose is making me depressed. I had a similar problem with Respiridone. I am also on sertraline 50mg but I think the Abilify is so strong, it is stopping the anti-depressant from working. I have not been this low for 20 years. I know it is because of the Abilify but my psych’s response is always to try something else and I don’t want anything else!! Thank you for writing about your experience, it has really helped me to be even more determined to come off it too.

    1. Hi, Anne. I hope you’re feeling better than you did a few days ago. Everybody is different so the tapering is so NOT an exact science. Have you had a chance to speak with your doc about it at all in the last few days? It was soooo hard but I am glad I did ditch the Abilify. More power to you!

      1. I am feeling a lot less depressed but I am still terrified about what I am doing because it is not with the approval of my doctor and I have not even told my family. What I might do is to just stay on 10mg for a while, at least until I see my consultant again. I was surprised to do a bit of internet research and to find out that Abilify causes weight gain, and also to see what small doses people were on compared to me, but then I am not on it for depression but because I had a psychotic episode back in July last year. I think sometimes it is used as a adjunct to an anti-depressant but for me it was the drug that pulled me back to reality. However, now that I am back in reality I don’t know why I am still taking it, apart from fear of what may happen if I stop it. Your blog is amazing by the way, beautifully written! Love, Anne Marie

  13. Been on Abilify for maybe almost a year now, on 2mg to augment the Cipralex/Lexapro I’m also on. It worked wonders on my depression but despite exercising and dieting my butt off it has caused me great difficulty trying to lose weight. It’s like it slowed my metabolism down to a snail’s pace or something. I’ve tried talking to my doctors about this but they all insist that Abilify is weight neutral – clearly it’s NOT but they will not admit it. So I finally had enough about a week ago and decided to quit cold turkey, that wasn’t a wise choice. Ever since I’ve gone back to how I used to feel – lethargic, incredibly fatigued, and depressed. I’ll check tomorrow to see if I’m losing weight. Even if I am I don’t know if it’s worth it. It sucks that I can’t be emotionally stable and physically fit, seems like I have to choose one. I’m frustrated

    1. You’ve summed up what a lot of us feel – it’s frustrating having to choose between looking and feeling good. NOT fair.

      It’s been a few days since you posted. Are you feeling any better? Did you have to restart the med? Hope you are well!

  14. Hi all — so glad I discovered this blog and I apologize in advance for my long comment. I was on Abilify for about 4.5 years, and 2mg worked miracles for me when added to Luvox for my OCD, depression, and anxiety. It was a lifesaver in 2009 when I cold-turkey quit Zoloft and nothing else would get me out of the resulting 3-month severe depression besides the Abilify, which practically had me back to my usual self overnight at just 2mg. I ended up adding Wellbutrin for sexual side effects of Luvox (not sure if this is even working), and Vyvanse to help with weight gain and low energy (and I have to say it does help with the energy, no idea about the weight). But as with most others here, the weight gain was still driving me insane, and making me feel really down on myself sometimes. In the end it’s probably only been about 20 lbs, and I probably needed to gain it to be honest. But I also just turned 30, and it occurred to me that as I’ll want to get pregnant somewhere in the next few years, and seeing as I’ve been on these four medications for a few years now, it might be time to start re-evaluating the drugs I take on a daily basis, since I’ll have to quit all of them during pregnancy. I’d tried going off Abilify in the past (too quickly) and felt horrible, sometimes even finding myself irritable after missing a single dose.

    I decided I wanted to give it another try this year, and under my psychiatrist’s supervision, began to cut my dose in half every couple weeks for 2-3 months. Now I’m taking 0.5 mg every other day or so. But I’m struggling a lot, and wonder if even 2-3 months was too quick. When I first started decreasing the dose, I noticed a return of the intrusive OCD thoughts that make me feel so depressed. Those faded a bit thanks to CBT, but now I just feel generally low throughout the day. I think it’s what others here have called “apathy” — one minute I’ll feel a glimmer of my usual self peeking through, the one who is very social, loves to plan events, enjoys lots of hobbies, shopping, cooking, etc. — the one who enjoys life. I don’t feel that the Abilify caused this, I think it just helped me to be “me”. But that glimmer of hope easily turns to “what’s the point” or “why bother” and I go back to feeling pretty hopeless again. I even wake up most mornings feeling excited/positive about the day (probably from my morning dose of Vyvanse and Wellbutrin), sometimes even able to go for a swim before work. But by the time I get into work I feel irritated by having to make small talk, and I just want to put my headphones on and keep going until I can leave. Once someone asks me something or pulls me into a conversation, I am able to pep up a bit, being somewhat my normal self although it feels like I’m acting. I’ve even managed to have some really fun nights out with friends too, but it’s been a struggle forcing myself to show up in the first place, and the happy/silly me that’s had a few drinks is obviously short-lived.

    My doctor has now said to try doubling my dose of Wellbutrin to see if it helps even things out a bit, and said if need be I can always go back on Abilify. But for some reason that feels like it would be defeat, and not help me in terms of long-term goals (i.e., not getting fat, and being able to survive pregnancy). Luvox will be scary to go off of too, but I don’t mind the thought of going back on it after pregnancy and I’m even willing to accept some of the sexual side effects for not having to re-arrange the bathmat 25 times before I go to bed, etc. I just don’t like the thought that I’ll never be 100% “me” again without Abilify, and I don’t want to worry about gradual weight gain for the rest of my life, along with other symptoms I noticed like feeling more aggressive/destructive when I’m upset. Does your experience indicate this might all just level itself out? Although my doctor is wonderful, he does not actually have to go through this himself. I see a therapist for CBT, but I think the only comfort I can really get right now is from other people who have actually experienced what I’m talking about. Sorry again for the long post.

    1. Hi, Janey – thanks so much for sharing your story. And, no worries about the length! Bipolar makes people feel very isolated and it really does help to share your story. You make a good point that most of our docs don’t have to live with the disorder so although they might be the most kind, compassionate doctor you’ve ever seen, they just aren’t feeling it the way we do.

      I can relate to a lot of what you describe in the second paragraph, and those were the things that made me so tired of being me. Do you feel OK now? I’ve known a few people who’ve done very well on a higher dose of Wellbutrin. This damn disorder is so difficult to threat, though. It’s such a pain to have to concede that effective treatment plans are as individual as a fingerprint and its a lot of hit and miss. Have you told *all* of the concerns you describe above to your doc? You should. (Personally, I’ve been known to schedule double appointments with my docs to make sure I don’t forget anything that I feel is important because of some dumb 15 minute time constraint. Because med makes me a fuzz-brain 🙂 ) As for things leveling out…I’m not that patient or tolerant. If I don’t feel a med is doing what it needs to or the side effects are screwing with me so much I can’t get through my daily routine, I get back with my doc ASAP. But that’s just me 🙂

      It sounds like you’re in a place that’s all too familiar – not very confident in the treatment plan you have and rightfully concerned with doing the right thing for the now and for the future. I really hope you start to feel better soon, no matter how you decide treatment should progress. Please let me know how you’re doing – if you take the higher dose of Wellbutrin, go back to Abilify or anything else. Be well!

  15. Hi, Vivian aka Manic,

    I am now down to 0.025mg of abilify. I used the liquid and I started at 2mg. I have been tapering my dose for 9 months without much problems. Why is everyone in such a hurry to get off of this potent medication in such a short amount of time. These idiot doctors don’t know how to wean these patients off. I had to figure it out myself! I am an RN and understand somewhat about medications. I am by no means a medical expert, but in my opinion, if people would get the liquid and titrate the doses down by 10% every 2-4 weeks there would not be so much suffering. I am probably going to take the 0.025 mg for one more week (it is basically just one drop on my tongue) and then completely stop. I will get back with you and let you know how it goes. Hope that you are well and thanks again for this much needed website!

  16. Melissa –

    I really need someone to talk to about this Abilify tapering. I am really suffering right now.

    I have been on Abilify steadily since Sept 2008. I was also on it from June 2006 – June 2007. Always low dosage (2.5 mg 2008 – 2010, 1.25 mg 2010-2011). I tapered down to .625 mg for 1 month and then stopped it in the fall of 2011. After about a month of no symptoms, I developed very bad withdrawal symptoms (nausea/diarrhea, headaches, tremors, skin burning, etc. – about 2 dozen symptoms). I had to get back on the Abilify after 10 weeks of this torture (even with a little help from lorazepam).

    At the end of 2012, I tried again, this time staying on .625mg for 2 1/2 months before stopping completely. Again, after a month with no problems, the withdrawal symptoms came roaring back. I again couldn’t endure more than 8 days of withdrawal, being that I saw no light at the end of the tunnel. In 2013, I stayed on 1.25 mg until Sept, when I lowered it to .625 mg. I had a little trouble adjusting this time, but I succeeded and remained on it for 4 1/2 months before deciding to lower it again. Feb.1 2014 I lowered it to .25 mg. After 2 1/2 weeks, I developed 24 hour a day headaches that lasted for 3 1/2 weeks and then stopped by themselves. Also bad skin burning (paresthesia) on my arms and legs, and intestinal problems. After one symptom-free day on Mar 23, followed by bad skin burning when I took the pill again, I decided to stop Abilify on Mar 24. The symptoms moderated, but didn’t go away completely. On April 16, my intestinal problems became extreme again, followed by the skin burning, tremors, and now additional symptoms. On April 20, I took .25 mg lorazepam to mute the symptoms. It helps a little, but not a lot. This morning, I woke up with extreme symptoms again.

    Can someone please tell me how to handle this taper? Should I try to stick with it until the end of May before going back on Abilify if unsuccessful? Some doctors say it takes a approximately month of withdrawal. I don’t want to endure this pain and discomfort only to have to go back on it again anyway.

    If I have to go back on it, how long should I stay at each level? If I start to develop withdrawal symptoms, do I stick with it for a month or so to see if it will dissipate, or immediately retreat to the lowest level that I could tolerate? I may have to take it back up to 2 mg for a few weeks, drop it to 1 mg for a few weeks and then to .5 mg for a few weeks. Then maybe I should use a syringe/oral solution for .4 mg, .3 mg, etc? I am very discouraged. I want to get off of this drug very badly. It put 20 pounds on me, and has thinned out my hair badly. I suffer from dystonia (severe back spasms/pain), memory and concentration problems from this. But the worst part is that it has raised my cholesterol 100 points (it’s currently 288) and my A1C sugar level is 6.2. (pre-diabetes).

    Thanks in advance for any help/info any of you can give. I live on Long Island, NY. If anyone knows of a doctor that has experience in difficult cases like mine, can you please let me know? My psychiatrist can’t understand why I am having such a hard time getting off such a low dose.

    1. First of all, your psychiatrist is an idiot! Abilify is a very potent medication, even at low doses. I would get back on the LIQUID Abilify. It took me 9 months to wean off of 2mg of Abilify, but I had very little side effects. I weaned by 10% every 3-4 weeks. You can do this. Abilify also caused me to have severely tight neck and shoulder muscles. There is an excellent book I recommend written by Peter Breggin, a psychiatrist that doesn’t prescribe medication. It is called Your Psychiatric Medication Could be Your Problem. I also recently found out what is causing my problems. I have mercury poisoning from my amalgam fillings. This can cause depression, anxiety and a host of other medical problems. Look up amalgam illness and see if this could be what is ailing you also. Let me know. Towards the end of my tapering off of Abilify, I was weaning by 0.1mg every 2-3 weeks. The liquid makes it easy to titrate. Please let me know how you are doing. Remember, this too shall pass!

      1. Thank you for responding. Congrats on your progress. I had to stop my “little experiment” on May 1 because the symptoms became too intolerable, even with the lorazepam. I guess I went about it the wrong way. I should have stopped the taper in Feb, as soon as the headaches started (2 1/2 weeks after dropping from .625 mg to .25 mg). And I shouldn’t have further aggravated the situation by stopping completely on Mar 24th.

        Doctors that I have seen say they don’t understand why my withdrawal symptoms start a month after stopping the drug, and why these symptoms don’t dissipate in time. The symptoms snowball, piling on as the withdrawal continues. They think I have an anxiety disorder. All of the withdrawal symptoms are physical, except that I guess I do get anxious, (as would anyone undergoing such incredible physical torment). I could see where someone could go mad from the pain and discomfort.

        I will look up amalgam illness. And I will look into Peter Breggin’s books. However, I know that my problem stems from a different cause. I worked in an office at Ground Zero and was present on 9/11 (2001) when the World Trade Center Towers were hit. I witnessed a lot down there, including seeing people falling off of the North Tower. I also suffered a job loss the following year, which ended my 22 year career. These two events affected me greatly and left me very upset and depressed. In 2004, I was given prednisone for my asthma and sinus conditions (which I developed since 9/11). Four days after finishing a week’s treatment, I was hospitalized for psychosis/depression. I think that the prednisone pushed me over the edge (steroid psychosis). That started my introduction to anti-psychotic drugs and anti-depressants (Zyprexa, Geodon, Zoloft). In 2006, I was given Abilify. After being on 2 mg for 1 year, I was taken off of it, but kept on Zoloft. (maybe I was able to get off of it then because I was still on Zoloft). However, I was still taking 2-3 one-week courses of prednisone each year. I weaned myself off of the Zoloft 6 months after the Abilify. Nine months later, in 2008, I had another short hospitalization. I stopped the prednisone after that. I think that my mental issues are behind me, but won’t know for sure until I can get off and stay off of this drug. I don’t want my life shortened by this drug (especially since I can’t tolerate statins to control the cholesterol).

        I am back on .5 mg of Abilify right now. I need to get rid of all of my symptoms, so will probably get stabilized on 1 or 2 mg. After a period of time, (but not any time soon), I will start the taper again. I can do it with pills back to .625, or possibly .5mg. For the remainder of the taper, I will use the oral solution in .1 mg increments. However, If I encounter intolerable side effects, I will have to give it up.

        Melissa, I have some questions:

        How long were you on Abilify?

        How long have you been totally off of Abilify?

        Are you still on any other drugs? (Sometimes it’s easier to get off of a drug if another is still stabilizing you).

        What were your withdrawal symptoms? Did you ever get sinus infections with it? (every time I stop the drug, I get a sinus infection)

        Once lowering the drug to the next level, how long did it take for you to develop withdrawal symptoms?

        If you encountered bad physical symptoms, did you retreat to next level up? How did you proceed to the next level down?

        Were you able to measure the oral solution down to .2 and .1 mg? My pharmacist says that he thought the solution was too thick to measure less than .2 mg – .3 mg.

        Thanks for listening….

        1. I am so sorry for the trauma that you have been through. I still feel it is worth looking into amalgam illness. I too, have experienced many traumas in my life. The one that put me on Abilify was when my 18 year old son told me he had gender identity disorder and wanted to be a woman. He moved to another state with his older sister and when he came back a year later he looked like a woman.

          I am currently on 100mg of Zoloft daily. Why did you get off your antidepressant before weaning off the Abilify? I have never heard of taking Abilify by itself for depression. I was on Abilify for about 2 years. I had tried 2 times to get off of it unsuccessfully. Then when I found out there was a liquid form I figured out that I could wean down on much smaller doses. I read a book by Peter Bregan, M.D. a psychiatrist that tells how to wean off pysch meds. You are trying to wean way to fast. You are only supposed to wean the dose by 10% every 2-4 weeks depending on how you feel. That means it could take almost a year to wean off 2mg of Abilify. I don’t know why your pharmacist is saying that the Abilify liquid is so thick. I got 2 bottles during my weaning it was almost as thin as water.

          When I first started the weaning process I experienced hot flashes and sweating, heart palpitations, and would occasionally feel light headed and see wavy lines and vision changes. I ate some peanut butter and it went away, I don’t know if the vision changes were related to low blood sugar. Then later on when I would lower a dose it would take 3-5 days before I would feel any thing. I would feel kind of like I had the flu and get emotional and cry easily. Sometimes I would have insomnia after I lowered a dose. Really all of these symptoms were pretty mild when I lowered the dose only by 10%. At the very end I was lowering the dose by 0.1mLs per month. If you do well on SSRIs, you might want to get on a low dose of this and stabilize on it before you start weaning the Abilify. I am not sure if sinus infections are related to the weaning. I never experienced them.

          I have been off Abilify going on 3 months now and will NEVER get back on it again! You can do this, you just have to be patient and go slow. Your brain chemicals have to readjust. Like I said, it took me 9 months to get off of it, but I haven’t relapsed into depression or anxiety.

          My problem now I have just recently learned is mercury poisoning from my amalgam fillings. Mercury poisoning has caused me to have severe chronic fatigue, which for years I was told and believed was depression. I have also experienced horrible anxiety in the past and I found a website that helped me tremendously with anxiety. I recommend it to everyone I know that has anxiety. It is called anxietycentre.com and centre is spelled that way because they are out of Canada. It is a very small fee to join and you have access to very valuable information about what causes and anxiety and how to recover. I also used one of their therapists off and on for a couple of years. All of their therapists have experienced anxiety themselves and have recovered medication free. The site also has information on how to wean off of medications. They don’t believe in medications.

          I am sorry about not getting back with you sooner, I continue to have crisis with my transgender now daughter as we have discovered that she is mercury toxic too. We are both trying to do chelation.

          Good luck, you can do this. I remember thinking that I would never be able to get off of Abilify. Even my nurse practioner that prescribed it said most of her patients couldn’t get off of it once they got down to 1mg.

          Take it slow and easy, that is the only way. Write me anytime.

          Melissa

          1. Thanks for the info, Melissa. I didn’t wean off of the Zoloft before the Abilify. In 2007, I weaned off of the Abilify first, and then the Zoloft 6 months later. In late 2008, I was back on Abilify only.
            It’s been 2 weeks since I restarted Abilify, and I’m first starting to see some real relief and improvement now. After I’m stabilized on the 1.25 mg (I quarter the 5 mg pills to save money), and have been feeling okay for a few months, I’ll try again, this time with the oral solution. I’ll be in touch – stay tuned…

          2. Thanks Iris, I am so glad that you have gotten some relieve. Please keep in touch. You will get off of this drug, it just takes patience. Please write me anytime, I know how alone one can feel in this situation.

          3. Melissa – How are you doing? Are you still on Zoloft? I am now on my 4th attempt (in 4 years) at an Abilify taper, which I started in November by reducing my dosage from 1.25 mg to 1 mg. From Nov 12 – Dec 31st, I had two 4 day periods of mild to moderate side effects (headaches, paresthesia (skin burning), etc). As of January 1, for the first time, I switched to the Abilify Oral Solution plus syringe, reducing the dosage by .1 mg per month. I am currently on .6 mg, with very few side effects so far (just mainly some anxiety and weepiness for a day or two per month). However, I just wanted everyone to know that the drug company is discontinuing the Abilify Oral Solution as of May 15, 2015. So, anyone who needs it (especially for a taper) should stock up before then.

          4. I was on Abilify for 2 years and it took me 9 months to wean off of 10mg. I used the liquid and weaned by 0.2mg which is equal to 0.2mls, I think, every 2-3 weeks. I have been off of it now for 1 year. I used a 1ml oral syringe that I got from the pharmacy. If you don’t wean slow enough you will experience anxiety and a host of other horrible side effects.

            I think I remember occasionally feeling light headed or dizzy. I also experienced seeing wavy lines or almost an aura, kind of like what people see before they have a migraine. That only happened twice the first time it really freaked me out and I ate some peanut butter and crackers and it went away. I don’t know if it was related to hypoglycemia, induced from the Abilify withdrawal. I also remember experiencing some mild insomnia for a couple of days after weaning. I also felt very foggy headed as well.

            I will never take Abilify again! I do take 100mg of sertraline daily because I have a lot of stressors in my life right now. I initially was put on Abilify for my extreme anxiety that started when my 18 year old son told me that he was transgender. I do have to say that Abilify did relieve my anxiety completely within 5 days which was a relief at the time, but I never would have started taking it, if I knew that it was such an ordeal to get off of. I don’t know if I could ever successfully wean off this medication without the liquid, it made it so much easier. I am appalled that the Pharmaceutical companies are going to stop making it. Probably so people will not be able to successfully wean off it. I remember the PNP that I saw told me that once her patients got down to 1mg that they were very rarely able to get off of it and would just opt to continue to take 1mg.

            A year ago my transgender daughter was suicidal, so I convinced her to check herself into a pscyh hospital. I told her that no matter what, don’t let them talk you into taking abilify! She has borderline personality disorder, but is not bipolar. That seems to be these psychiatrists front line drug now! That was the first medication that they put her on. She initially took it for several days and said it made her sleep all of the time. When she checked herself out AMA she quit taking it.

            I also did a lot of cognitive therapy for anxiety and learned how to control it!

            Good luck to everyone that is struggling with the weaning process! My prayers are with you. My own prayers are what helped me to get through! Melissa

          5. Hi Melissa –
            I have hit a bit of a roadblock. I started .6 mg on April 1st (reducing from .7 mg the month before).. Since Apr. 26th, I have been experiencing mild to moderate withdrawal symptoms ( tremors in my chest upon awakening, skin burning on my arms and legs, mild headaches and nausea, dizziness, blurry vision).
            They symptoms are uncomfortable, but not as severe as when I have been totally off of the drug.

            How long did your withdrawal symptoms last and how did you handle them (besides eating the peanut butter)?

            I am not sure what to do at this point. Should I stay the course for several more weeks and try to tolerate it? The symptoms don’t appear to be lessening or going away. Should I back it up to perhaps .65 mg? Should I add 25 mg of Zoloft back? (I haven’t used Zoloft since 2007, but my doctor supplied me (at my suggestion) with some in case I need it for this taper). I may try to contact Dr. Peter Breggin for advice…

            Thanks for any suggestions you, or anyone you know may have…..

          6. Iris,

            I am so sorry for your suffering! In my opinion, just remember that I am not a doctor, (thank God!), I would go back up to .65mg for a couple of weeks. You said that your doctor gave you Zoloft (Sertraline), which is an antidepressant to help you to get off of the Abilify. Did you mean Xanax (an anti-anxiety) medication? If he did give you Zoloft, starting it now is going to add to you already miserable symptoms. Initially, when starting Zoloft, it can temporarily increase anxiety for several weeks until it starts to work after approximately 6-8 weeks.

            If you doctor gave you Xanax, please see if he will prescribe you clonazapam 0.25mg instead. Xanax is a fast acting extremely addictive benzodiazipine. Clonazapam is also a benzo, but is slower acting and less addictive. It would help you with your symptoms. You can take as much as 2mg per day of clonazapam as needed for anxiety. I speak from experience with the Xanax. Eleven years ago, I had to go to rehab to get off of Xanax, it was 6 weeks of the most hellacious withdrawals.

            Good luck, don’t give up! I’ll be praying for you. Sorry for the late response!

          7. I did mean Zoloft. My doctor gave it to me at MY suggestion. In 2007, I successfully got off of 2 mg of Abilify, but I was still on Zoloft at that time. I figure that the people that are able to get off of Abilify have an easier time of it if Zoloft is still present to regulate/”buffer” their serotonin level. Just my theory. However, I’m afraid to use the Zoloft because of all I’ve read about SSRI withdrawal symptoms, which sound just like what I am going through now, anyway. So, Zoloft may be a last resort. Also, I’m not sure how much to take of it. I have 25 mg pills. I also have Lorazepam (Ativan) in reserve to use for anxiety (also at a very low level (.25 mg)), but I am afraid on getting hooked on that. And besides, it never helped me with my physical withdrawal symptoms in the past.

            Thanks for your advice. I did back up to .65 mg starting last night. And I did write to Dr. Peter Breggin. I’m not holding out hope for much of a response there. I immediately got back an automated message saying that they get hundreds of inquiries each week. They may or may not respond to me in the future, and referred me to his books (which I’ve already seen) in the meantime.

          8. Melissa –
            I did take it back up to .65 mg for a couple of weeks and that gave me partial relief. Then I took it back down to .6 mg on May 20th. I’m starting to feel worse again, but the worst part is that my blood pressure is very high. Just on a whim, I had my husband test my blood pressure. Mine is usually very healthy and on the low side. Since 5/28, my readings are 5/28: 146/102, 5/29: 151/97, 150/80, 162/101, 5/30: 160/92. I am very alarmed and scared. I saw my nurse practitioner about this yesterday. Looking at my past history, she agreed that the high blood pressure was being caused by the withdrawal. She told me to monitor my blood pressure, keep a log and come back in two weeks (but come in immediately if it goes over 160/100 (which it did last night)). I will monitor it this weekend, and may have to return to the doctor’s office on Monday. She said she may have to put me on some blood pressure medication, at least temporarily while this withdrawal is going on. In the meantime I just raised the Abilify level back to .7 mg. I may have to cut this experiment short and see if I can live on 1 mg instead of 1.25 mg of Abilify.
            I guess that blood pressure should be monitored on a regular basis while any withdrawal is taking place. I am now drinking hibiscus tea and eating more oatmeal…. If you have any advice for me, I’d welcome it. Thanks.

  17. Hello, all. My son, age 15, was deeply depressed and a counselor suggested trying Zoloft 50 mg. After 3 weeks on the medication, he suffered medication-induced mania. Doc in hospital added Abilify 2 mg for a couple days then increased to 5 mg. Saw psychiatrist after discharge, who immediately stopped the Zoloft and added Trileptal 150 mg twice daily. My son has only been on the Abilify and Trilpetal for 3 weeks. He never had any issues prior to going on the Zoloft. My gut tells me to stop the medication. Want to titrate down safely. I fear psychiatrist and primary care doc will not like him going off of the medication. I seriously want him off of it. He has expressed wanting to go back to the way things were before this horrible experience. Coimments or suggestions?

  18. First of all do you know why your son is deeply depressed? Is there a situation that caused his depression? Is he going through puberty? I would suggest finding an Integrative Medicine doctor. Just google Intergrative Medicine doctors and you should find a website that will help you find one in your area. An Integrative Medicine doctor looks for hormonal imbalances and mineral/vitamin deficiencies that may be causing your son’s illness. You will need to wean him off medicines slowly. There is a book written by Peter Breggin, M.D. called, “Your Drug May Be Your Problem” How and why to stop taking psychiatric medications. I got mine on Amazon. Dr. Breggin is a psychiatrist that treats patients without medications. This is where I got my information on how to tapper off Abilify. Psychiatry is a sham. Psychiatrists are in cahoots with the Pharmaceutical companies. There are other ways to treat depression besides drugs! Is there a chance that your son could have heavy metal poisoning? Does he have any silver fillings in his teeth? If so look up amalgam illness. I am currently trying to recover from mercury poisoning from my amalgam fillings. Please keep in touch and let me know how he is doing.

  19. Hi Melissa and anyone else who has successfully withdrawn from Abilify,
    I have some questions for you.
    Are you completely off all medications, (Zoloft included)?
    Do you feel that while tapering off the Abilify the Zoloft helped the process at all?
    How long did it take you to adjust to a new dosage typically?
    I have a little faster taper in mind it is 2.0mg for 3 weeks, 1.66mg for 3 weeks, 1.33mg, 1.0mg, 0.8mg, 0.6mg, 0.4mg, 0.2mg, 0.1mg, 0.05mg and I will be finished by mid March if able. I was on a much larger dose of 15mg but I definitely felt the effects of my most recent drop of 2.5mg to 2.0mg for 5 nights of a little less sleep. I am planning on dropping to 1.66mg Abilify with a compounding pharmacy that my psychiatrist will write a prescription for.

    My biggest question for anyone who has successfully weaned off Abilify is how long does it usually take to get adjusted to a change in dosage?
    I usually get 8 hours of sleep and I am getting 6 or 7 for the past 5 days. I am not too worried until I get down to 5 hours of sleep because that is when psychosis can slip in.

  20. I have come down from 20+ mg to 15 mg tablets of Abilify. I am really scared of dropping to 10 mg because of bad experiences in the past with this medication. My doctor is reluctant for me to go below “sustainability level” or something … this being the normal level for ppl with chemical imbalances or something … .

    I appreciate everyone’s comments so far, wow, so good. Melissa is a nurse, wow, a godsend.

    Matthew.

    1. I was on 20mg and then 15mg of Abilify and then I just halved the dose every four weeks. I came off it completely on 5th May 2014 and I have been fine without it, but I am still taking 50mg sertraline every day, because I do find that this helps me. Abilify is a terrible drug I think, it made me feel uncomfortable in my own skin, I had insomnia, and terrible tinitus (ringing in the ears) all night long. Don’t be afraid to come off it. If I had not come off my meds in the past, I would never have realised I was wrongly diagnosed, and could have been drugged up and zombified for life. After all, it is you taking the risk and not your doctor, and if you want to, he should not try to stop you. Best of luck Matthew and you are welcome to email me anytime if you need a bit of support: annebrian6@aol.com

    1. Lisamarble – I am in the same boat as you. Please see my conversations with Melissa above. Yes – the Abilify Oral Solution was just discontinued on May 15th. I am not a doctor, but discuss with your own doctor the idea of creating your own oral solution Or check with the drug company for the best method and formula to do this. I am still having problems even with this method. I am currently at .65 mg, and am very fatigued.

  21. I am trying to wean my teen son off the 5 mg. dose of Abilify that he has been on for a year. We can only get 5 mg. tablets of Abilify (no liquid to titrate down). So I have been cutting the pills in half. To go from 5 mg. to 2.5, I gave it eight weeks. Then I waited eight more weeks to go down to 1.25. I guess I can half the 1.25 now, to do .625 daily…but is it okay (about the equivalent?) to give 1.25 every-other-day instead, considering Abilify’s long half life? Then after eight more weeks, give 1.25 mg. every-third day and etc.? The only problem with cutting the 1.25 in half is that it seems pretty darn uneven, no matter how I try it.

    I hope my question makes sense…I don’t feel my son’s psychiatrist (he is actually a great one) foresees going off such a low dose of Abilify (.625 now) as a problem, but my gut tells me it could be, because my son is very sensitive to medication (going on OR off medication/has to be very low and very slow)…and I’m just not willing to risk it. The paychiatrist has trusted my judgment on the weaning, but I am getting down to such a small amount that it’s (ironically) now that I really need some advice! I want to make sure I help his brain adapt/adjust in the best way possible, and I just don’t feel I can yank him off Abilify yet, even at this low dose. He’s been through so much. Thank you guys, for any advice on the weaning. I feel a little alone, cutting up Abilify and tapering what “seems right,” like I’m a mad scientist, ugh!

    [To put this in context: my son was originally put on Abilify as an atypical adjunct med for sudden, VERY severe OCD, and it really was a scary/dire situation, so it’s hard for me to regret the Abilify given then, as it did seem necessary at the time…but after later medical testing confirmed my son has PANS (and is currently being given ongoing antibiotic treatment for the causal agent, which is an active tick infection), and him also working hard at ERP throughout this hellish experience, he is doing much better with his OCD…and I would really like him off the Abilify, sooner rather than later. He also does have ADHD/takes 10 mg. of Vyvanse for that (diagnosed much earlier in his life with ADHD), and he’s also not yet been taken off a nightly dose of Anafranil (for his OCD).]

    By the way, I think you all are very brave and insightful. Bless you, for sharing your struggles, triumphs and insights.

    1. I have split the pills into .625 without much of a problem. I assume that they still make 2 mg tablets that can be split into .5 mg and then .25 mg doses. I also have always been sensitive to most medications. The first time I weaned off of Abilify, I had been on 2 mg for a year. I had no problem splitting the pills into 1 mg and then .5 and then jumping off. I don’t think I spent more than a month on each level down. However, I was still on Zoloft at the time, and I think that helped take the edge off. I had no bad side effects at all that time. However, after being back on low dose Abilify for 3 years straight, I have spent the next 4 years trying to get off of this drug, with no success. I am currently back on 1.25 mg and am now battling high blood pressure problems due to my latest attempt to get off of it. Of course, being 61 years old doesn’t help the blood pressure situation. It’s a shame that we are finding out that most psychiatrists don’t seem to know how to handle withdrawal from these drugs and rely on the patient to have their own plan of action. Best of luck to you.

      1. Thank you so much for responding, Iris. I am wondering if I am being way too cautious on this taper down. It’s probably my own fears, based on when my son was initially so ill. As he’s tapered down, I’m hyper-aware of any possible side effects, and that can get a little complicated when you add in the PANS situation. Your input is very helpful. I think the fact that I never even considered asking the psychiatrist to write a new prescription for 2 mg. tells me everything about how I am feeling…like I have to keep working with splitting up these 5 mgs. by myself, because I picture this very nice man looking at me as he says: “Hmmm…well, after .625, I think you can just take him off it.” And maybe I can. But here is where science feels like a letdown and the “art” part comes in – and me, a nervous Mom, feels like I’m making educated guesses for my son about a powerful medication.

        I am so sorry that you are currently facing your own struggle kicking Abilify to the curb, Iris. I so feel for you. I am astounded that just about everything I’ve heard/read regarding Abilify (and some other antipsychotic medications) has indicated that although, yes, there are psychiatrists who advocate a slow taper, there seems to also be tendency to dismiss how hard it is to get off these types of medications (that said, I do understand that these medications have also helped many – when nothing else would). I guess the obvious answer is that the professionals just don’t have their own personal experience with these meds, so it’s hard for some of them to believe such a tiny (crumb) dose STILL is a big deal for many. I know the medical pros are human beings and not perfect, but I admit that it’s hard for me to give them a complete pass on this aspect; I’d like to see more of them dig into the research, esp. on these “newer” medications/listen carefully to what their patients (or their loved ones) are reporting to them.

        Whenever in doubt, I go online to the people who have had these experiences. Thanks again, and take care of yourself. I’m so sorry the Abilify Monkey is on your back.

    2. i got off of it finally breaking the pills down and taking them in small doses. THEN i got on well butrin 150 mg as i got down the the LAST specs of the abilify. That was what did it for me. FINALLY OFF OF IT! IT’s been about 3 months and no withdrawal symptoms the whole 3 months!

  22. Oh man. Feel so badly for you, Sarah.:( My son’s initial dose was 5 mg., and he’s down to .625 right now, but I tapered him down super slowly because of reading from people online like this group. Did you just start tapering down, or have you been tapering down for awhile and then the vomiting began recently? My son didn’t vomit, but when he first went from 5 mg. to 2.5, he was dizzy on-and-off for about three days (which can make you feel nauseated), but that did stop.

  23. I am a man in his forties,
    I was properly diagnosed with schizophrenia 20 years ago after my third relapse and was then prescribed Risperdal. My doctor slowly lowered my risperdal for Abilify because I was getting tingling effects on my brain and it was distrurbing me. I’ve always been diagnosed as a mild schyzophrenia but I’ve tried from 1992 to 1995 to stop using drugs and it never worked.

    Now it’s been 2 years with 10 mg a day I have had no weight gain because I have chron’s disease. I’m just at the borderline of being overweight at 175 pounds.

    I lowered my prescription from 10 mg to 5 of abilify last year for 7 months without noticing any effects… until the stress of work forced me to take 1 month off… I had problems dealing with friends.

    I now had a motorbike accident last month that forced me to stay in bed for two weeks and my muscles in my bum were hurting the most. At that time I had not taken my meds for a few days and decided it was the right time to stop this Abilify.

    My psychiatrist had told me back in the days that eventually I would be able to come off the medications. And I truly believe it.

    Last time I visited my psy. she recommended that I taper off to 7.5mg because It’s affecting my sleep…. and I mean a lot… I’ve been sleeping up to 12 hours a day… which just doesn’t work anymore for me…. I’ve had to miss some work often… blood test come up with nothing and all other tests taken didn’t show up any health problems other than Triglyceride levels too high.

    Since my “cold turkey” approach 2 1/2 weeks ago… I sleep a lot… the worst was 5 days later when I was nervous and a bit shaking. it lasted one day.

    Now I sleep dreaming of games that make no sense although I’ve been playing a lot of games for the past few years I’ve now quit gaming a week ago.

    I want change in my live… I want to like my work again…. I want to come in on time… I want to come back home and not fall in bed… I want to stop driving back home sleepy… it feels dangerous. I want to stop feeling tired at work.. and sometimes forced to come back home early.

    I want to feel energized again…. MY MAIN PROBLEM is SLEEP… and too much of it isn’t helping at all

    Apparently no one here as stopped cold turkey was was able to succeed… but for some reason I feel I can do it.

    Side effects up to now are a bit of sweating at night, some spasm in muscles, dizziness today.

    I haven’t even talked to a doctor yet for fear of taking another medication and for difficulty getting in touch with them. I’m in Quebec and it’s horrible how hard it can be to talk to a doctor.

    I’m going to try to take some leave from work to deal with this in fear of having problems at work… and visit a doctor soon. My wife and family and friends are all aware of my decision.

    I feel I can do this… I’ve never been depressed before and don’t think it will affect that…

    1. I was on 10mg Abilify a day and I pretty much came off it cold turkey, reducing the dose by half weekly. I did not have any problems at all. If you are going to go med-free it might be an idea to look at alternatives such as mindfulness meditation and exercise eg swimming, running etc. Does talk therapy help you, or have you tried cognitive behavioural therapy? It might be an idea to put some alternatives in place before you stop your meds. Just a thought. Best of luck!

    2. I wish you all the best. I think it’s great that you have told your family and friends what is going on, and that you will run it by a doctor soon too. I get how hard it all is.

      I’m just a Mom, who has been weaning my son off Abilify. He has a different diagnosis (basically, OCD brought on by a tick-borne illness), but as he has been treated for the infection, his OCD has gotten much more mild, and he has been able to start coming off Abilify. Although my son has great doctor who said it was fine to now try taking him off Abilify, I’ve been pretty much handling the weaning process…and after getting my son down to .625 milligrams for about two months, this is Day 4 of him being totally off it. Right now, pretty much, every morning I wake up hoping he won’t go through bad withdrawals. I should probably relax some, but I’m a Mom, so it’s hard to do that sometimes.

      As far as any withdrawal symptoms, he’s sweated some at night…and had about 30 minutes of being slightly nauseated this morning, but other than that, he seems to be doing fine with it. That said, I have no idea if other bigger withdrawal issues can still come up, so I just keep hoping not. Wish I could ask someone if we’re doing okay, but I know everyone is so different with how they respond to medications (being on them or going off them), so I don’t really expect anyone to know…not sure if four days with minimal problems is a good sign, or if withdrawal can come on stronger as more days go by, even though I’ve weaned him as slowly as I’ve known how. You said Day 5 was rough for you, so we’ll see how his Day 5 goes. He hasn’t seemed nervous or been shaking so far.

      Just sharing, with an understanding that all situations are unique, but I get it. It isn’t easy. Best wishes.

  24. I have looked back at my previous comments and realised I was actually on 20mg Abilify a day – gosh I did not realise I was on that much ! And I cut it down by half every four weeks, not two. Sorry – it was a couple of years ago and I had forgotten the details.

  25. Well, this is Day 50 of my son being off Abilify. After doing a taper so slow that several times I practically lost the last crumb of a pill that I gave him daily, he successfully came off this medication. He is doing fine and feels better off the stuff. He did have some withdrawal symptoms, but coming off it super slowly was doable for him.

    I know everyone has their own personal chemistry/medical history and reasons they were put on Abilify, but I hope this post is encouraging to someone. I have really appreciated the sharing on here!

  26. I forgot to say thank you to this blog’s writer, Vivien. Bless you for writing this blog. You’ve helped so many by talking about your experiences, same as those commenting on here. Hoping/praying for the best for everyone. You are all brave!

  27. I have been on abilify 5mg for only 6 days. I have mild slurred speech and I’m super restless after 3 days. I can’t sleep…waking up 4 times or more a night. I have a job where I’m sitting at a desk, with a headset, talking on the phones all day. I can barely stand sitting here. It’s making me crazy. I called my pdoc. I’m still waiting. I want to just quit them. Or I could take half for 6 days and then quit. Not sure what to do.

    1. Joey,
      My reply function never works right, so hope you see this.
      Did you hear back? I almost said what I would do – but I’m not qualified in any way – and I don’t want to give bad advice for your specific situation. But keep calling back, emphasizing your concern. Nice, squeaky wheel seems to work best in all doc offices. Try phoning, try emailing also…skywriting, if needs be! Ask if you can get in for an appt. ASAP, if that will get better results.

      Really feel for you.

  28. Hi. I’ve been reducing my 2mg Abilify for over 2 years. I’m down to 1 MG every other week. I am finding that it’s getting difficult now, especially insomnia, dizziness, crying etc. I’m super sensitive to these kinds of meds and originally gained 135 lbs. Dr’s don’t generally believe me. I’m hoping this eases soon.

    AR

    1. I found myself in the hospital after 4 months off Abilify I thought I could beat the medication but I got a psychosis … where I was thinking my friend wanted to kill me… I strongly suggest you follow the doctors weaning advice…. if not change doctor but don’t wean off by yourself… I quit to abruptly…. I hope that helps other people … cause…. I’m not about to get off medication again, to find myself in a great mood for several months , I was like on a high after quitting them….and then passing a few months in the psychiatric ward not able to work for several months and then feeling pain for two months after that… which was probably due to the new medication I now have to take.

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