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Elllie: Coming off Clozaril


elllie

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For some years now I have been steadily reducing my dose of Clozaril from 600mg down to 50mg although I have just had to put the dose back to 75mg in the hope of staving of the intence techincolour dreams I have been having combined with head pain and depression which has hapened with the last reduction from 75mg to 50mg, hence the return to 75mg. I was wondering if any of you have any idea how long these type of withdrawal effects last for and if anyone has any suggestions on how to make that final leap to freedom from this drug.

Although I have been diagnosied with schizophenia about 17 years ago when I started taking clozaril its now looking like that diagnosis was wrong, but still am  having these withdrawals. :-( Grrrrrrr

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • Moderator Emeritus

Hello Ellie,

 

You're going about this the right way, and the fact that you're having some withdrawal symptoms just means that you went down a bit too fast that last time. Here's our basic guideline on tapering any sort of psychiatric drug:  Why Taper By 10% of My Dosage?  I'm not sure if Clozaril comes in a liquid form, but that would be your best bet for tapering now that you're down to a much lower dose than where you started. A compounding pharmacy could likely make a liquid for you, or here's how to make your own: How To Make A Liquid from Tablets or Capsules  The reason for getting a liquid at this point is so that you can reduce by smaller increments, say 7.5 mg. instead of 25 mg. all in one leap. Tapering gets more difficult at the lower doses as many members here can tell you.  There's a long scientific explanation for it that I can't locate at the moment, but that's the way it is.

 

You'll find that many people on this forum were sadly and badly misdiagnosed and ended up on psychiatric drugs that have done them nothing but harm.

 

I'm glad you found us. Welcome to the forum and please take plenty of time to browse around.  There's a lot of solid information here and plenty of friendly support for your journey off psychiatric drugs.

Psychotropic drug history: Pristiq 50 mg. (mid-September 2010 through February 2011), Remeron (mid-September 2010 through January 2011), Lexapro 10 mg. (mid-February 2011 through mid-December 2011), Lorazepam (Ativan) 1 mg. as needed mid-September 2010 through early March 2012

"Never attribute to malice that which is adequately explained by stupidity." -Hanlon's Razor


Introduction: http://survivingantidepressants.org/index.php?/topic/1588-introducing-jemima/

 

Success Story: http://survivingantidepressants.org/index.php?/topic/6263-success-jemima-survives-lexapro-and-dr-dickhead-too/

Please note that I am not a medical professional and my advice is based on personal experience, reading, and anecdotal information posted by other sufferers.

 

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  • 1 month later...

Hiya sorry I have not been around but I have good news I'm now back on 50mg after cutting the tablets in half. I am finding this reduction painful but tollerable. I have spoken to the Psych who I feel is on my side and wants to help me come off all the psychiatric meds which I am on and has given me advice on which to come off next and a timeframe of how quickly to withdraw them.

I have also found out why I am experiencing the pain coming off the Clozaril there is apperently an anticholinergic effect to this medication which causes the pain in withdrawing; apperently its the result of neurons which have been suppressed for 17 years waking up. I can live with the pain if thats the case.

And to top it off the Psych is looking into  hormonal psychosis to change my diagnosis to that :-)

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • 4 months later...

On the 25.7.14 after 17 years I took my last dose of Clozaril and in a coule nof weeks I start the slow withdrawal from Abilify (aripiprazole). After that last dose of Clozaril the withdrawals kicked in like you would not beleive insomnia, which is only just settling; nightmares, that were worse than anything that I had ever experienced before; physical pain in my head which was constant for abput 2 months and a constant tighness in my musles to the point of pain if I tensed them. But as I said now just under 6 moths on the only sympom of withdrawal I have left is the remmneants of the insomina.

So now in about 2 weeks I start reducing the next medication, Abilify-2.5mg every 2 mounths from a starting total of 30mg. As I have moved area to follow my dream and get a degree I have had to change doctorss and am not under a psychiatrist anymore nor do I need to be much  to the annoyance of the GP. It is this new GP who has reluctently agreed to go with the plan laid out by the psychiatrist who had known me for 15 years to reduce the next medication. I hope he sticks to his promise.

The reason why I have a 20 year history of too many medications to list, menstrual psychosis misdiagnosed as treatment resistant schizophrenia. Well it would be resistant to treatment as I never had it. Anyway I will try to update again when I start my reduction. :)

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • 2 weeks later...
  • Administrator

Welcome, elllie.

 

What is your insomnia pattern like?

 

If I were you, I might allow my sleep to recover more before making additional drug changes.

 

Is there a reason you need to go off aripiprazole right away?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi Altostrata

My sleep pattern has more or less returned to normal now, I am sleeping well every night waking up about once a night. If I am unlucky I might wake twice but it is very infrequent that I can't get back to sleep. This is a total change from the situation before which was that when I was waking up it was impossible for me to get back to sleep. I did unfortunately need pharmacutical aid to sort out my sleep pattern 10mg Amytriptaline for one week which made a lot of difference.

 

The reason why I am so desparate to come off these meds is that I think and have been told by my old psychiatrist that the Aripiprazole has a wakening effect plus all the other side effects that go with antipsychotic medications. I have taken meds for over 20 years, it will take another 2 years to withdraw from this one and then at least another year to withdraw from the citalapram.

 

The other reason why the timing of this is so important is the potential rebound/sensitivity psychosis; something the most sane and non-psychotic person can suffer from after all this time on these sort of meds at the sort of doses that I have been on. If my circumstances werre that I could pick and choose my time and I was back in Cornwall where people know me I probably would not start this reduction at Christmas time; but I am now at university and I have been told that if I do suffer from these withdrawal effects I will be off the course. Therefore I need to start these reductions in the holidays which start on Saturday to give me a chance to estimate the withdrawal effects in a safe timespace so I can stay on my course and have the hope of future employment, something that would be impossible if I was to be chucked off the course. Also if I'm chucked off  the course I am homeless, as I had to give up everything to be on this course.

 

That being said I have made new friends up here who are not attached to the university who are extremely supportive, helpful and know what is going on I will be with these people on Christmas day. I am however terrified of the potential withdrawal effects I have suffered rebound psychosis before. I am also aware that when someone who has had a diagnosis of schizophrenia and a history as long as mine says they are coming off their meds alarm bells rightly ring however it has been proven by the psychiatrist who knew me for 15 years that the diagnosis was wrong and my problems were hormonal; now solved permentantly by an opperation which has left me unable to have kids, which is a shame.

 

Anyway I see the GP in a couple of hours to get the tablets that I need to reduce the dose and I am nervous this GP has already acted in a way that could have jepodised my place at university twice. His reasons for these actions were my long history even though he freely admits I have absolutely no symptoms. He will however be monitoring me closely I have to see him again in a weeks time for him to check that I have no psychotic symptoms. If I do get bad withdrawals I will sadly have to go back to the original dose as I can't afford to be branded psychotic again even if it is solely due to withdraawing from a medication. This is because due to the stigma and lack of understanding around this illness I will probably be locked up and my future will once again be in the gutter. I have a chance to build my life I'm not throwing that away, its the first time in my life that I have had concrete hope for the future and to do this free of meds would be amazing.

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • Moderator Emeritus

Hi ellie,

 

Welcome from me too.  Here is the link to tips for tapering off aripiprazole:

Tips for tapering off Abilify (aripiprazole)

I think you will be fine if you taper slowly enough and do long holds if you feel symptoms starting to increase. Perhaps start with a 5% cut, to see how this effects you.  This may take quite a long time, but I'm sure you will get there in the end.

 

I'm not a doctor.  My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one.

My Introduction Thread

Full Drug and Withdrawal History

Brief Summary

Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects

2 month 'taper' off Lexapro 2010

Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal

DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms

Failed reinstatement of Lexapro and trial of Prozac (became suicidal)

May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins.

Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes

Supplements which have helped: Vitamin C, Magnesium, Taurine

Bad reactions: Many supplements but mostly fish oil and Vitamin D

June 2016 - Started daily juicing, mostly vegetables and lots of greens.

Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered

Oct 2016 -Symptoms returned - bad days and less bad days.

April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close.

VIDEO: Where did the chemical imbalance theory come from?



VIDEO: How are psychiatric diagnoses made?



VIDEO: Why do psychiatric drugs have withdrawal syndromes?



VIDEO: Can psychiatric drugs cause long-lasting negative effects?

VIDEO: Dr. Claire Weekes

 

 

 

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Well I started the reduction this morning and wow did that liquid knock my head off I think the absorbtion rate is a lot quicker when taken in this form. I know its way to early to feel any effectsd from the lowered dose as the half life of this drug is between 75 and 146 hours. Scary.

However the rate which I am reducing this has been agreed and I plan to stick to it its 2.5 mg every 2 months I'm coming down from 30mg. It will take 2 years.

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • Moderator Emeritus

Hi Elllie, I've merged your topics to your original intro thread so that your history is in one place. 

**I am not a medical professional, if in doubt please consult a doctor with withdrawal knowledge.

 

 

Different drugs occasionally (mostly benzos) 1976 - 1981 (no problem)

1993 - 2002 in and out of hospital. every type of drug + ECT. Staring with seroxat

2002  effexor. 

Tapered  March 2012 to March 2013, ending with 5 beads.

Withdrawal April 2013 . Reinstated 5 beads reduced to 4 beads May 2013

Restarted taper  Nov 2013  

OFF EFFEXOR Feb 2015    :D 

Tapered atenolol and omeprazole Dec 2013 - May 2014

 

Tapering tramadol, Feb 2015 100mg , March 2015 50mg  

 July 2017 30mg.  May 15 2018 25mg

Taking fish oil, magnesium, B12, folic acid, bilberry eyebright for eye pressure. 

 

My story http://survivingantidepressants.org/index.php?/topic/4199-hello-mammap-checking-in/page-33

 

Lesson learned, slow down taper at lower doses. Taper no more than 10% of CURRENT dose if possible

 

 

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  • Administrator

ellie, a 10% reduction is based on the last dose.

 

If you are taking 30mg Abilify, a 2.5mg reduction will only be 10% or less for the first 3 reductions.

 

Given your prior history of being on psychiatric drugs for a very long time and difficulty coming off, plus the persistence of the withdrawal insomnia, if I were you, I'd plan on very, very small reductions. See Micro-taper instead of 10% or 5% decreases

 

"Rebound/sensitivity psychosis" may very well be a withdrawal symptom for some people who have gone off psychiatric drugs too fast, whose nervous systems are sensitive in particular ways. Sandy Steingard is a psychiatrist who is looking into this. See http://survivingantidepressants.org/index.php?/topic/5380-psychiatrist-some-patients-are-better-off-without-antipsychotic-drugs/

 

She has found that for those who do suffer "psychotic" symptoms in withdrawal, slower tapering can avoid those symptoms.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 6 months later...

Hi its been a while and life has thrown everything at me but I am now on 15mg of Aripiprazole with no psychotic symptoms. The plan is to reduce 5mg every 2 months which has worked so far. I get physical withdrawal symptoms after 3 days ( halflife is 75 hours for Aripiprazole) and for about a week after that but I can live with that. The thing is I reckon and the doctor suspects that the peripheral neurophathy that I am now experiencing badly is due to the 22 years that I have been on antipsychotics. 22 years scary and my problems with psychosis were all hormonal. I now know this for certain as after an extremely stressful life event I have experienced no psychotic symptoms.

But on a more positive note I should be clear of the Aripiprazole by Christmas :D

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • Administrator

Hello, elllie.
 

Why are you now on aripiprazole? How long have you been on it? How did you go off clozaril?

 

Since you've been tapering by 5mg and are now at 15mg, a 5mg reduction now would be 33% of your dosage. We recommend decreasing by much smaller amounts. See

 

Why taper by 10% of my dosage?

 

Tips for tapering off Abilify (aripiprazole)

 

Your symptoms may be due to a drug-drug interaction. Doctors sometimes neglect to consider this. Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and copy and paste the results in this topic.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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"Citalopram may increase the blood levels of ARIPiprazole. This can increase the risk and/or severity of side effects such as drowsiness, seizure, Parkinson-like symptoms, abnormal muscle movements, and low blood pressure. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Contact your doctor if you experience agitation, aggression, confusion, convulsions, muscle spasm, or movements that you can't stop or control such as lip smacking, chewing, puckering, frowning or scowling, tongue thrusting, teeth clenching, jaw twitching, blinking, eye rolling, shaking or jerking of arms and legs, tremor, jitteriness, restlessness, pacing, and foot tapping. Also be alert to symptoms of low blood pressure such as dizziness, lightheadedness, fainting, and/or increased pulse or heart rate. Avoid driving or operating hazardous machinery until you know how these medications affect you, and use caution when getting up from a sitting or lying position, especially at the beginning of treatment or after an increase in dose of ARIPiprazole. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor."

 

I was misdiagnosised with schizophrenia and they had me on everything over the years. There are very few antipsychotic medications that I have not been on. The problem I had was menstual psychosis which does not respond to antipsychotic medication, I have had my ovaries removed and have experence no psychotic symptoms since.At the time of my operation I was on Clozaril, Aripirazole and Citalopram, so I am coming off them one at a time. As you know I have already successfuly under the supervision of a good doctor come off the Clozaril, this took 3 years of slow reductions, next is the Aripiprazole.

Unfortunately I have no way of tappering off in any incraments less than 5 mg as the liquid knocks my head off and I am unable to concentrate on anything for a few hours after taking it. There are no tablets smaller than 5mg avalible in the UK and you can not cut these tablets due to there gastro resitant coating. I hate the fact that I can not tapper properly and know the dangers but unfortunately I have no choice. Due to the stigma surrounding mental ilness in particularly schizophrenia and psychosis, I doubt I could find a friendly chemist who would make up the liquid I need to tapper as the branded liquid is not an option.

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • Administrator

Are you taking any other drugs?

 

You could have capsules made to custom dosages. Taking part of your dosage as a tablet or capsule and part in liquid form reduces difficulties with the liquid, plus you have the flexibility to carefully adjust your dosage.

 

Please see Tips for tapering off Abilify (aripiprazole)

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi

The only drugs that I am now taking are Aripiprazole, Citalopram, Kliovance HRT and Seritide inhalor for asthma. The last two mentioned are not mentioned on the drug checker site. In the UK the smallest dose tablet that is avalible is 5mg the 2mg tablets that would have been ideal are not marketed in this country, I have checked with pharmacists and the BNF. The problems I had with the liquid happened when taking just 2mg, I think they were due to the rapid absorbtion of Aripiprazole when taken in this format. Because of the speed of absorption of the liquid I reckon that it is absorbed sublingually (in the month) therefore entering the bloodstream extremely quickly bypasing the gastrointestinal tract completely. After taking the liquid I can feel it in my cerebellum.

 

Let me tell you a little bit about myself. I am 38 and now live in Cumbria UK I was living in Cornwall UK where I came off the Clozaril under doctors supervision. I moved to the other end of the country to do my nurse training something I have wanted to do for well over a decade and it was going very well until an attack on me  that has consequently forced me to take a year out from my university nurse training. During my training we have studied medication managment and therefore I know the dangers of changing the preparation of a medication. Some tablets can be cut in half but only if they have a score line, tablets with out a score line are gastroresitant  and will damage the oesophagus if the gastroresistant coating is damaged, this has been confirmed to me by lecturers and pharmacists. Which unfortunately means Aripiiprazole can not by cut.

 

For this reason suspending crushed Aripiprazole in water is inadvisable and to get capsules is a impossability at the moment, as even if I could find someone to prepare them for me financally I would not be able to pay for them. This is because at the moment I have no income as my student funding has stopped and I can not get social security funding at this present time. The little money I have left needs to be spent on food and rent.

 

https://www.medicines.org.uk/emc/medicine/30378#PHARMACOLOGICAL_PROPS

 

http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Scientific_Discussion/human/000471/WC500020164.pdf

 

(Aripiprazole is absorbed in the gastrointestinal tract therefore making its absorbtion of the  first-pass mechanism. This means that it goes stright to the liver and changes to its metabolite dehydro-aripiprazole there.) This is the reason why it has a gastroristant coating so it can bypass the stomach to get to its site of absorption.

 

I am sorry for the rant but any advice as to how I can tapper safely given my present circumstances and the avalibiliy of just 5mg tablets in the UK would be greatly appreciated, bearing in mind that the liquid is not an option for the reasons I have already stated. Thanks Ellie

Clozaril 17 years now stopped; Aripiprazole 6 years about to stop; citalapram 6 years still taking. And I'm not even going to try to list the rest I have been on as I would be here all year. ;)  lol Shall we play BNF bingo and see how many different antipsychotics they had me on over the years?

 

"They said I was mad I said they were mad. Damn it they outvoted me"-  Nathaniel Lee (but hey I'm not mad and I'm joining them)

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  • Administrator

You are correct, a liquid is probably at least partly absorbed in the oral mucosa and gets into your system faster, which can cause different sensations. You may be sensitive to this.

 

In the US, Abilify is additionally available in both uncoated orally disintegrating tablets and liquid form. (Please see Tips for tapering off Abilify (aripiprazole) ) Clearly, its action does not depend on the tablet coating traveling through the stomach. (I was unable to find the formulation of the coating, but it is possible it's just a glaze.)

 

You received the standard off-the-cuff reply from your medical experts about splitting tablets. However, that is not the whole story. See http://www.currentpsychiatry.com/fileadmin/cp_archive/pdf/0512/0512CP_Pearls2.pdf(PDF)

 

We have many people here successfully tapering Pristiq by splitting the tablet -- not only unscored but a matrix formulation that is degraded by breakage -- because there is no other way to go off Pristiq.

 

If you can get aripiprazole orally disintegrating tablets, that might be one way for you to more gradually lower your aripiprazole dosage. Or you can split the tablets, as we discussed.

 

Otherwise, you will have to figure out your own way to gradually taper. If you can do this without skipping doses, please add your method to Tips for tapering off Abilify (aripiprazole)

 

(For an informed discussion, please read the links the staff gives you.)

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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