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badmeditator: second gen antipsychotics 20 years


badmeditator

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Failed out of school several times because I would be in bed with depression for 3 weeks at a time every fall.  5 days in hospital -> major depression diagnosis.  5 years later -> bipolar II diagnosis. About 10 years of life lost to undiagnosed illness in total.

 

Took 1-2 mg of risperidone between 2001-2014.  Completed university, successful career, stable marriage since 1997.

In 2014, switched to lurasidone because of better metabolic profile.

 

I don't actually think the lurasidone is helping a lot.  I suffered from sleep apnea for at least 10 years but nobody screened me although there was a Health Canada warning about the connection between SGAs and sleep apnea.  My resting heart rate is 90 bpm.  Pretty sure I have heart damage from the sleep apnea.  My BMI is 27 which is not high enough to expect sleep apnea.

 

I will get zero support from my GP for my plan to taper according to my plan.

 

Very interested in anyone's experience with tapering from lurasidone with a diagnosis of bipolar II.

 

Also interested a recipe for making liquid lurasidone.  What to dissolve it in, does it require heating, etc.  I made a plan based on pill splitting - the last step looks terrible.

 

 

2020-12-15_21-28-28.png

2020-12-15_21-42-21.png

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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My tapering strategy is informed by the suggestion to follow the hyperbolic curve as given in this paper:

 

Horowitz, Murray, Taylor "Tapering Antipsychotic Treatment" JAMA Psychiatry Aug 5 2020

 

I fit a curve to 4 points in this paper to determine the curve for the drug I'm tapering:

 

Wong, Kuwabara et al. , Psychopharmacology (2013) 229:245-252 "Determination of dopamine D 2 receptor occupancy by lurasidone using positron emission tomography in healthy male subjects"

 

I find it hard to split the lurasidone pills past the 5 mg mark, and I can't locate a compounding pharmacy who will help me.

 

 

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • Moderator Emeritus

Hi @badmeditator and welcome,

 


I don't know much about tapering off lurasidone, but this link might be helpful to you if you haven't seen it. It mentions making lurasidone into a liquid as well:

 

Tips for tapering off lurasidone (Latuda)

 

In your signature you say there are no problems so far which is great. Do you have any symptoms at all currently? And are you taking any other drugs or supplements apart from this? If so that's a good idea to put into your signature as well.

Sorry that I can't help you more right now, but I will ask other mods to see if they have more specific advice or input to give. 

2011-2015: Escitalopram (Cipralex) 20 mg, Voxra 300 mg (quit Voxra in late 2015, no issues)

2016: Started tapering Escitalopram 5 mg at a time, every fourth week

July 24th, 2016: Escitalopram 5 mg

April 2nd, 2017: Quit last dosage (WD worsened a lot)

Ca 6 last months of 2017: Taking Diazepam 15-25 mg irregularly, less than once a month

Ca Dec 2017: Out of Diazepam, i.e free from all prescribed drugs

Now: Still drug free

Supplements: Irregular intake of Omega-3, magnesium, vitamin D.

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  • Moderator Emeritus

When to end the taper and jump to zero?

 

From Post #1 of the Tips for Tapering topic:

 

On 7/9/2015 at 12:14 PM, Altostrata said:

 

Make a liquid yourself from tablets or capsules


While lurasidone is only slightly soluble in water, you can make a liquid suspension, see How to make a liquid from tablets or capsules

Use an oral syringe to precisely measure out doses as small as .01mg.

 

Additional information about chemistry of making a lurasidone liquid http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4381388/

 

Other data http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=88a244d1-eddb-499c-bee2-e1f49056e78f

 

Drugbank http://www.drugbank.ca/drugs/DB08815

 

 

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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  • Administrator

Welcome,  @badmeditator

 

I would not be too anxious about keeping to a curve while tapering. Listen to your body, if you start to feel withdrawal or other odd symptoms, you may be tapering too fast. Please let us know how you're doing.

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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1 hour ago, Altostrata said:

Welcome,  @badmeditator

 

I would not be too anxious about keeping to a curve while tapering. Listen to your body, if you start to feel withdrawal or other odd symptoms, you may be tapering too fast. Please let us know how you're doing.

 

Thanks for your reply @Altostrata.

 

I revised the plan, see picture below.   Does this look like what Dr. Horowitz is suggesting, assuming my D2 calculations are correct?  Reason I am asking is that I had trouble going from 35 to 30 after 6 weeks on 35.    According to the plan I am going from 35 to 20 in the spring.  This is a much higher change!  But I am going to be on 35 for 5 months this time.

 

Also, my psychiatrist has told me that in his experience people have trouble in the fall and spring.  Have you ever heard of seasonal effects, and should I take them into account?

 

2020-12-18_22-34-55.thumb.jpg.e40f8e82728edeb9f5741b11b4d59134.jpg

 

 

 

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • Moderator Emeritus

I've provided the information above about making your own liquid suspension.  There is no reason to be making reductions larger than 10% when you can create the dose you need.

 

As Alto said it is important to listen to your body/symptoms and not rely on a formula or the calendar.  We do have members who have no choice but to make larger reductions but in your case you are able to go more slowly than your plan.

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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7 hours ago, ChessieCat said:

I've provided the information above about making your own liquid suspension.  There is no reason to be making reductions larger than 10% when you can create the dose you need.

 

 

Thanks.    Making a liquid is not a pressing practical concern because I don't have to get into that until Spring 2022.  I did read the post you referenced, and I confirmed that I can buy the Ora-Plus suspension solution.

 

There is only one step that is larger than 10%. This step is 13.7%, does not seem too bad?  10% is a pretty arbitrary number.

 

You are saying I can go more slowly.  It is already a 3 year plan - are you saying that because I've been on SGAs for 20 years, I should prolong even more?  This medication has caused very dramatic side effects in my case - I stopped breathing at night (!) and my heart rate is over 90 bpm all day long.

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • Moderator Emeritus
13 hours ago, badmeditator said:

You are saying I can go more slowly.

 

What we are saying is that you need to let your brain and nervous system dictate how fast you go.  It's fine to have a plan but you need to understand that sticking to is dogmatically and not being flexible might cause problems.  Use the plan as a guideline.  For example if there are times when you experience additional stress or are sick it is better to hold for longer.  Some members find that traveling and/or returning home can cause an increase in their symptoms and at these times it is better to hold for longer until things settle back down to WDnormal.  We have members who have tried to go too fast and it has ended up taking longer to get off their drug than if they had done a careful taper.  Some have ended up on an additional drug which then also has to be tapered.

 

Stability

WDnormal

 

14 hours ago, badmeditator said:

There is only one step that is larger than 10%. This step is 13.7%, does not seem too bad?  10% is a pretty arbitrary number.

 

The idea is to get off the drug with minimal discomfort and disruption to our lives.

 

You have the ability to get the dose for the 10% or less reduction.  Why risk it?

 

The less than 10% reduction is a harm reduction method.  See the quote below.  If you reduce by a larger amount and get bad withdrawal symptoms it might take you a long time to stabilise.  Some members find that they don't go back to the stability they had before they got bad withdrawal symptoms.  This is because your nervous system can become sensitised.  It is better to go slower than risk going to quickly.  Any reduction is heading in the right direction and you will get off eventually.  It will take me 1 year to get off 0.5mg Pristiq.  But I'd rather go slowly and carefully than to risk upsetting the apple cart.  I've put in a lot of money and effort to get this far doing a nice and careful taper.  And I'm going to keep doing that until the end.  BTW I was hoping to get off by my 60th birthday and I've just turned 63 and won't be off until I'm 64.

 

  

On 8/6/2011 at 6:43 AM, Altostrata said:

 

Why decrease by such a small amount?

The risk of severe withdrawal is so great for some people, a very conservative approach to tapering to protect everyone is called for.

 

Do not assume you will be lucky, if your taper goes wrong, it can take a very long time for you to recover.

Many people seem to be able to taper off psychiatric medications in a couple of weeks or even cold-turkey with minor withdrawal symptoms perhaps for a month or so. Doctors therefore expect everyone can do this.

 

However, estimates dating from the 1990s suggested 20%-80% cannot go off quickly -- they suffer acute withdrawal symptoms and then post-acute withdrawal symptoms for much longer.. A recent paper, Davies and Read, 2019,  found about 45% experienced significant withdrawal symptoms.

 

You can't know how your nervous system will respond to a decrease in medication until you try it. If you go too fast, won't know if you're in the unlucky half until it's too late. It's a lot easier to taper slowly than to put your nervous system back together again after it's injured.

 

 

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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@ChessieCat  Thanks for typing all that.  I only ever viewed it as a plan, as you can see from my history I took a run at dose reduction and had to make a new plan when 6 weeks per step did not work out.  Plans rarely survive contact with the enemy.  And it's hard to make predictions, especially about the future.  My psychiatrist actually advised a much faster taper and in my ignorance I thought 6 weeks would be much longer than required. But what I'm finding out is that psychiatrists don't know a hell of a lot about tapering.

 

What I'm really concerned about is that the drop from 35 to 30 after 6 weeks caused effects that were very unpleasant.  The new plan, pictured below taking your advice into account, involves a drop from 35 to 20 next Spring -  this is a much bigger step in terms of absolute dose even if it's only supposed to be 9% in terms of D2 saturation.

 

Honestly if I could get down to 20 mg per day, I'd be very pleased and I could live with it even if I never made further gains.

 

I read what you wrote about being 3 years delayed several times.  That must be very hard.  May the best day of your previous tapering be the worst day of the coming year.

 

2020-12-20_09-22-18.thumb.png.a1b29b259a97e0fee6925f109653b18c.png

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • Moderator Emeritus
6 hours ago, badmeditator said:

The new plan, pictured below taking your advice into account, involves a drop from 35 to 20 next Spring -  this is a much bigger step in terms of absolute dose even if it's only supposed to be 9% in terms of D2 saturation.

 

SA doesn't work with D2 saturation.  It's not measurable, whereas symptoms can be compared and can tell you whether your brain is managing to adapt after a reduction.

 

Have you seen the withdrawal symptom list?  Sometimes we have symptoms which we don't attribute to withdrawal.  I know I had an upset stomach for several days after reducing my Pristiq by half and just naturally assumed it was a tummy bug, but I think it was more than likely withdrawal.

 

Dr Joseph Glenmullen's WD Symptoms Checklist

 

6 hours ago, badmeditator said:

Honestly if I could get down to 20 mg per day, I'd be very pleased and I could live with it even if I never made further gains.

 

My original plan was to get to 50mg Pristiq and stay there.  I had been experiencing mild serotonin syndrome at 100mg.  However once I learned things here I decided to try and get as low as I could and I've just kept going.

 

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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  • 3 months later...
badmeditator

I have been on 35 mg for 101 days now, have felt totally fine for months. 

 

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • 2 weeks later...
badmeditator

I've been on 20 mg for 8 days and feel perfectly fine.  Yay!

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

Link to post
badmeditator

After nine days at 20 mg I am alarmed by my level of anger/irritability, which is not super high, but is noticeably increased.

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • 2 weeks later...
badmeditator

Days 9 and 10 were really tough but now that I'm in day 19 there are more good days than bad days.  I have felt totally euthymic for a few days now.

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • 5 weeks later...

Having been on 20 mg from Mar 23 2021 to May 07 2021, I decided to adopt a micro taper approach that follows the hyperbolic descent advice from Dr. Horowitz in England.  I fit a hyperbola to the Latuda D2 saturation curve in Matlab.  The equation for a 60 week taper turned out to be y= -8.2697 + 660.1674/(x+22.3768).  It fit pretty well- the green dots are the points I got from the D2 sat paper I was referencing. I am following the same 6 week cycle suggested by brassmonkey, where you stick with the week 4 dose for weeks 5 and 6.   Those two week holds extended the taper period to 88 weeks, which for me is New Years Day 2023 (just by coincidence).


 

 

2021-05-10_20-03-45.thumb.jpg.b673a566854070c3964362370caa53c3.jpg

 

 

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

Link to post

8CUVCS0.png

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

Link to post

I have a true milligram scale (+/- 1 mg) but you don't really need one according to my compounding pharmacist.  The reason is that there are many many variables that affect absorption.

 

I split a bunch of 20 mg pills into halves and quarters.  The balance is made up with powder that I grind with a mortar and pestle - lurasidone turns into a nice powder very easily. I want to take as much of the dose in intact chunks as I can because I got a headache when I took 78 mg of powder stirred into tea.  My theory is that the surface area of the powder is super high compared to pills.

 

n6prt3R.jpeg

 

 

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • Moderator

By mixing the powder with hot tea you greatly changed the characteristics of the drug, this will affect the absorption rate, the way the body reacts to the drug and a variety of other things that would trigger a bad response. This drug needs to be stored and used at no more than 30C. Anything over that will degrade the medication and can render it useless.

 

Even though there are a lot of variables involved with absorption it is very important to keep the dose size and timing consistent. Some people are less susceptible to minor variations, but there is a lot of things going on in the background that can take time to develop and once they go wrong it takes a long time to get back on track. 

20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013.

Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks.  The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better.

Current dose 0.000mg 04-15-2017

 

"It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general."  Stephen Hawking

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badmeditator
8 hours ago, brassmonkey said:

By mixing the powder with hot tea you greatly changed the characteristics of the drug,

 

Tea was not hot!  I let it sit on a counter for an hour.

 

Yesterday I got some rice paper and I dumped the dose onto it, wrapped it up and swallowed it. Worked pretty well.

 

8 hours ago, brassmonkey said:

Even though there are a lot of variables involved with absorption it is very important to keep the dose size and timing consistent.

 

Controlling the mass down to +/- 1 mg is not that important, the Amazon scales that are +/- 4 mg will be fine given that the filler ratio is around 4.   Timing is important mainly relative to meals, which double the absorption of this drug.

 

May I ask what theoretical basis you have for going down to homeopathic doses at the end of the taper?  Asking for information, not trying to start a fight. 

risperidone 2001-2014

lurasidone 40 mg 2014-Aug 2020

lurasidone 35 mg for 6 weeks ->no problems

lurasidone 30 mg for 3 weeks -> loss of motivation, high anxiety

lurasidone 40 mg reinstated

lurasidone 35 mg Dec 11 2020 -> no problems

lurasidone 20 mg Mar 23 2021

 

 

 

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  • Moderator
brassmonkey

The majority of a taper is based on the SERT Occupancy curves that you seem to be familiar with. When we get to the Endgame Taper and deciding on an Exit Dose, there is no theory about it, but rather hard won experience from working with many thousands of people. This has shown time and again that the smaller the Exit Dose the better. For many years it was considered the 1mgai (milligram active ingredient) was sufficiently low. Many top experts including Horowitz still think this way. If we were to analyze the data available on this site it would be found that 1mgai is still much too high. There is an ongoing debate about it. As a general target I look at "original dose X 0.000625= exit dose".

20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013.

Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks.  The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better.

Current dose 0.000mg 04-15-2017

 

"It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general."  Stephen Hawking

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