Thorin: withdrawal from Latuda

[Thorin]

Hi, sorry, I don’t have a signature yet. I am in the process of titrating off Lurasidone and at times the withdrawals are horrific. With that in mind I would LOVE to hear some positive stories of people coming off this med. I started on 40mg 7 or 8 years ago when given a misdiagnosis of bipolar 2. I am currently taking 12mg a day (as of 7 days ago). I’ve been dropping by 2mg each time since I got down to 20mg. I tried three times to come off this med much faster and failed terribly. The drop from 16-14mg was very difficult and this recent drop has me feeling hellish! I think I may need to reduce the amount I decrease by a little. Any advice is more than welcome!

thanks

Edited September 27, 2022 by manymoretodays
moved from Success Stories to Intros, * duplicate post also awaiting approval in antipsychotic survivor topic in SS forum, name to title

[manymoretodays]

Hi there Thorin,

Yes, please, give a try at a signature.

How to summarize your drug history in your signature

click on the underlined passage, to get to instructions for doing one, and this is different from any information you might have given on registration.  It will appear below your posts, wherever you post.  Please note all drugs taken in the signature.

 

( Thorin, please scroll up and go to the first post in the links I give.  I'm just checking them, and some seem to take one to the end of those topics.  Again, *make sure and read the first post in linked topics which has most of the information you will need to get familiar with now)

 

How often are you dropping by 2 mg of Lurasidone?

We go with a harm reduction practice here.  See:

*Why taper by 10% of my dosage?

The 10% or less taper is calculated off each previous dosage, not just the starting dose, or a set amount of a decrease each time.  In this way we hope to minimize or prevent WD(withdrawal) symptoms or WD from setting in.

 

 

You mention feeling hellish.  You are still in a time frame where you might want to updose back to your last dose of 14 mg of Lurasidone.  That may alleviate some of what you are feeling as far as WD symptoms now.

Please see:

*About reinstating and stabilizing to reduce withdrawal symptoms

 

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

 

*Tips for tapering off lurasidone(Latuda)

more information here ^, on getting the non-standard doses needed to do a successful harm reduction taper

 

Important topics in the Tapering forum and FAQ's

 

This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your tapering, give updates, and just keep a record of your journey. 

 

Welcome aboard.  Look forward to hearing more from you, and seeing how we might help.

 

Love, peace, healing, and growth,

manymoretodays(mmt)

 

 

 

 

 

Edited September 27, 2022 by manymoretodays
checking links

[Thorin]

Hi, thank you for the response. I will construct my signature shortly. I am dropping by 2mg every 3-6 weeks. While it’s been difficult every time it was particularly bad dropping from 16mg-14mg. Yesterday I had very bad withdrawals however today, while a little wobbly, I am functioning quite well. I will watch the symptoms for a few days and go back up to 14 mg if things become too difficult.

I will start the 10% taper from my next drop. So that would be dropping the dose from 12 mg to 10.8mg? Is that correct? Any other advice is very welcome. This has been such a horrible process and while I can’t WAIT to get off this med I know I’m stuck on it while I taper correctly. Horrific that I was put on it in the first place for a misdiagnosis. Was not educated about the medication at all and didn’t know enough back then not to blindly trust the doctor. I will NEVER make that mistake again!

[manymoretodays]

Hi again Thorin,

I am glad to hear of a bit of a Window now and that you do feel like you are functioning okay or even quite well.  That's super!

 

Yes, that's correct.  10.8 mg of Latuda, would be a full 10% taper from 12 mg.

You can do less of a percentage drop.  See:

The Brassmonkey Slide Method of Micro-tapering

Micro-taper instead of 10% or 5% decreases

 

My concern is......how fast you might have come down from 40 mg to 12 mg of Latuda.  Sometimes previous FT's can catch up with us.

 

You'll like this link too:
Why taper? ;SERT transporter occupancy studies show improtance of gradual change in plasma concentration

 

So many of us.....blindly trusted.....and yes, you WON"T make the same mistake again.  Pfffft......why do I always learn by trial and error!

 

Get to your signature already!  I know you are busy, but just do it.  I get the feeling you will be a valuable contributor here so don't delay.

 

Best, L, P, H, and G,

mmt

 

Edited September 28, 2022 by manymoretodays

[Thorin]

Oh god withdrawal and anxiety really bad today. Not sure why yesterday was ok and not today. Only difference is coffee. Staying away from that for a while!

[Thorin]

Definitely coming off this med MUCH slower from now on.

just reinstated 14mg dose. See if that helps. Have also had to take some Clonidine to see if that helps with the unbearable anxiety.

[manymoretodays]

Oh buggars, sorry to hear that,

Get in the habit of checking for any drug interactions, prior to starting any medications, along with your Latuda.

See how you fare plugging all current medications in at Drugs.com/Interactions checker

If you have more than 3, then you'll need to sign in there, which isn't a problem, they won't plague you with ads or emails

Then post here a link to your drug interactions, or copy and paste.

Thank you.  It's all a great learning experience.

And offers us important information, to help you with further and future tapers.

 

We don't recommend a lot of supplements, or additional drugs, on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system.  

 

Magnesium, nature's calcium channel blocker 

Omega-3 fatty acids (fish oil) 

 

I'm going to just put a copy of your present signature here for now:

This is a long story. Will try to remember....

 

Age 16 (1995 - 2000) -Paroxetine (Don't remember dose, believe this medication did not help); Age 21 (2000-2004) - Effexor 37.5mg (Helped somewhat for a while), tapered slowly. Couldn't come all the way off. Experienced what I now know are withdrawal and rebound symptoms; Age 24 (2004-2012) - Lexapro, Xanax - crazy psychiatrist put me on 70mg Lexapro and minimum 2mg Xanax a day; About 32 (2012-2017?) - misdiagnosed by same doctor with Bipolar 2. Despite him sending me to be assessed by another psychiatrist who said I did not have Bipolar this doctor convinced me I did. Tried every mood stabiliser plus occasional amisulpride when I couldn't sleep or felt like I had 'too much energy'. Nothing worked. Experienced many horrible side effects.; About 35 (2017-current) - Put on Lurasidone 80 mg, quickly titrated down to 40mg as side effects were horrible. Put on Pristiq (50 mg). Still on minimum of 2mg Xanax a day; About 41 (2020) randomly dumped by terrible psychiatrist despite being addicted to Xanax (never abused it) after he complained I did not see him enough. Managed to find a new psychiatrist that is relatively amazing. Diagnosed with cPTSD, depression, anxiety and ADHD over a reasonable period of time. Confirmed no Bipolar. tapered off Pristiq withSwitched from Xanax to clonazepam and started tapering at 0.125 mg each reduction, a cross taper at the end, prescribed VERY low dose of dextroamphetamine. First medication that's genuinely helped. Minimal side effects; Age 42 (2021) Tried to taper off Lurasidone three times unsuccessfully. Relatively quick taper from 40mg to 0 mg over a couple of months the first time. Reinstated at 20mg. Tried twice more to taper from 20 mg to 0 mg dropping by 5 mg each reduction (about every 2 weeks). Did not come close to succeeding; Age 42-43 (2022) Started tapering from 20 mg by 2mg each month approximately. Started approximately March; Current (2022) Dextroamphetamine 3.75mg twice a day if needed on days when I'm working, Clonazepam - 0.125mg 3 x day (total). Will finish this taper after lurasidone. Lurasidone just reinstated from 12mg back to 14 mg after approximately 8 days at 12 mg. Will stay at 14mg for a couple of months before trying a 10% taper or less.

 

And that is an excellent recall of your drug history since 1995,  thankyou.

If you can get it into a format like the example below, that will help us to see more easily, and at a glance, what we need to see, wherever you post.  Narratives go into replies, right here.  I may go ahead and bold what we need to see in the signature edit in the above copy.  Get the years, and dates, and then drugs and doses listed.  I liked seeing your ages as well.  And my oh my, you've been on the merry go round, diagnoses, and medications.

 

FOR READABILITY, SHORT LINES ARE BEST.

• A list is easier to understand than one or multiple paragraphs
• Include ALL drugs, doses, and dates (starting and stopping)
• Any drugs prior to 24 months ago can just be listed with start and stop years
• Use actual dates or approximate dates (e.g. mid-June 2018) rather than relative time frames (e.g. 3 months ago)
• Spell out months (e.g. "January" or "Jan" as 9/1/2016 can be interpreted as 9 Jan 2016 or 1 Sept 2016)
• Please leave out symptoms and diagnoses

 

Example:

2001–2002 paroxetine 
2003  citalopram 
2004  paroxetine
2008  paroxetine slow taper down to 2016 Aug off paroxetine
2016  citalopram May 20mg  Oct slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg

 

If you edit your signature, the new one replaces any prior signature. It will appear in your signature under all your posts, even your old posts. If you want to save the information in the old signature, copy it and save it in a file on your computer or in a post in your Introductions topic.

 

(As of 12/31/13: Signatures are limited to 12 lines of text.)

How to add or edit your signature

1. Click on this link to open the correct page in User Settings:
   Create Your Signature in "Account Settings". 

You can edit from that link to your signature ^.  Again hit SAVE, when done.  Get a date in there for your recent updose of Latuda too.  And I'm happy to help, if needed.  Give a good try first though.

 

Okay, and one more link worth perusing now:

Taking multiple psych drugs? Which drug to taper first?

 

And then, keep in mind, now that you are here, that we will be just evaluating your current picture now, and then planning with you, for further tapering.  So stay put, be patient, and I hope you will continue with us.

 

Oh so hoping, that maybe you are just having another Wave......soon to change to a nice Window.

 

Best, L, P, H, and G,

mmt

 

 

Edited September 29, 2022 by manymoretodays
spelling, grammar, organization

[Thorin]

Thanks for the response. Updated my signature. Feeling much better today after reinstating 14mg Lurasidone yesterday.

Cheers

[Thorin]

Lurasidone taper schedule

 

Hi All,

 

just wondering what tapering schedule you all used to get off Latuda/Lurasidone?

 

I’ve been dropping by 2mg but that has become too much. Currently just reinstated at 14mg. I’m going to hold here for a couple of months and then attempt a 10% taper. I’m concerned this will be too much though and may have to go slower. The Brass Monkey method looks interesting.

 

what have been your taper schedules? How did you successfully measure out minute quantities of Latuda?

 

Any positive advice and experiences is welcome. Please don’t send me horror stories. That’s not what I need to hear right now. I’m very aware of how hard this is (it’s not that I don’t care, I just need some hope/positivity right now).

 

thanks!!!

 

Edited September 30, 2022 by ChessieCat
added topic title before merging with intro topic

[ChessieCat]

Post #1 of this topic explains how to get non standard doses as well as provides the information about the recommended taper rate:

 

Tips for tapering off lurasidone (Latuda)

[Thorin]

Thanks. I did read all that. Just curious about peoples personal experiences.

cheers

[ChessieCat]

Here is the search results for Latuda in the Introduction forum.  I've sorted it newest first.  You could check out those member Introduction topics:

 

https://www.survivingantidepressants.org/search/?q=latuda

[ChessieCat]

And for lurasidon.  It will depend on what name the member has used, ie only Latuda, only lurasidone or both which will be duplicates.

 

https://www.survivingantidepressants.org/search/?q=Lurasidone

[Thorin]

Hi, after a little emotional support I guess. Kinda worried I won’t be able to come off this medication. I’ve obviously become VERY sensitive to reductions (and reinstatements). I can’t handle the thought of staying trapped on this medication. After reinstatement the other day the acute withdrawals stoped almost immediately. I feel very wiped out and spacey and quite weak after two days of reinstatement from 12mg-14mg. But I can function. Do most people get off their medication eventually? I am willing to do whatever it takes to get off this med but the acute withdrawals are unbearable. Freaked out a bit atm!

[FindRest]

It’s very possible to get off of Latuda successfully. The key will be to stabilize, giving your body the time it needs to settle down before even thinking of tapering again. Sounds like increasing your dose has helped your symptoms. That’s a very good sign. Now, it’s important to wait. Wait as long as it takes for things to normalize. This could take several months of holding your current dose. Then, you could introduce a tiny taper (can be much less than 10% … I had to do 2% tapers every 6-12 weeks for awhile). If the tiny taper works without any problems after a month, then perhaps you could increase it a bit the next month. Some months, you won’t be able to taper at all. But, in the end, you will get there. 
 

Tapering very slowly is what will help minimize any unbearable withdrawal symptoms. You go as low and slow as your body tells you to. And, never taper again when you are still experiencing bad symptoms from a previous taper. Time and patience are your friends here.

 

You will get there. It feels overwhelming, but inch by inch you’ll get to the finish line.

Edited October 1, 2022 by FindRest

[Thorin]

Thank you so much for posting. I really appreciate it. I needed to hear that it was possible! I was still experiencing some withdrawals from my previous taper, they’d mostly passed but clearly my body wasn’t ready for another drop. Lessen very well learned! I will sit at this dose as long as it takes to feel ok again, then maybe a little longer before starting to drop the dose again. Was thinking of dropping by 1mg next time (~7%) but maybe I’ll start even lower…. I’ll see how that goes and like you said, if it’s ok I can increase t he amount i drop by later.

thanks!

[manymoretodays]

Hi Thorin,

Yes, when ready, you could do tapers by <10% for sure until you get your confidence back.  One can get shaken by bad WD experiences.  And yes, giving yourself, your system time to heal from the previous fast taper IS a great idea.  Look how far you have come instead of how far you need to go......that may help.

And buckle your seatbelt, as this will be a journey of sorts, and not a quick one, your quest to one day become drug free.

HOLDING is fine.  HOLDING is great while waiting for a nice window, and further stabilization.

Thank you FindRest for stopping by. 

And I too, will send emotional support now Thorin.  You can and will do this......when the time is right.  Trust your body to let you know that......when the time is right.

 

I went ahead and did the Drug Interaction Report for your current 3 and sometimes 4 drugs:

Drug Interaction Report Drugs.com

(I did have to sign in to get all 4 in there)

 

"Dextroamphetamine 3.75mg twice a day if needed on days when I'm working,"

and I took the above from your signature.  Even with dextroamphetamine, I think that when you are taking it intermittently, that can further confuse and throw off the CNS or nervous system balance.  We don't recommend skipping doses or alternating doses for that reason.

See: The rule of 3KI's: Keep it simple. Keep it slow. Keep it stable (see 3. a.)

 

Can you list the times that you take each of your drugs?  Just note the time, and then the drug by name and dose.

 

Thank you.  I sure make you work!  You'll be glad though I think, when you learn more, and it should help to make things feel more manageable.

 

Best,

L, P, H, and G,

mmt

 

 

 

 

Edited October 4, 2022 by manymoretodays
emotional support :-) fixed 3KIs link

[Thorin]

Hi, thanks for your message. I'm taking three meds currently rather than 4. I'll double check my signature to make sure it's correct,

 

Timing of meds is as follows:

 

Lurasidone - 14mg between 6.30 and 8.30 pm

Clonazepam - 0.125mg at approx 0830, 1300 and bedtime

Dextroamphetamine 3.75mg at approx 0830 and 1300 on days that I need it (usually Monday - Friday)

 

I definitely need to listen to my body a bit more (and have in the past with coming off ADs) but tbh i didn't realise what was happenning to me was withdrawals until just the other day, I thought it was my cPTSD, worse than it's ever been before. Turns out it's withdrawal which means I can hopefully manage the symptoms a bit better......

 

Thanks

[Thorin]

Sorry, I did take a Clonidine as well didn’t I. Not a fan really.

[Altostrata]

Hello, @Thorin Please take your drugs on a more regular schedule, a couple of hours of variation can cause odd symptoms. 

 

How long have you been taking clonazepam 3 times a day? If you look at your drug interactions report, you can see why you might feel weak and fatigued much of the time. These could be adverse effects of clonazepam in particular. Why was it added to your cocktail?

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from your drugs.

[Thorin]

Thanks. I’ll do the list. A long time ago I was put on a high dose of Xanax by a terrible psychiatrist. The psychiatrist I currently see switched me to clonazepam and has helped me titrate off. I started having issues with the Lurasidone so paused the clonazepam taper to come of the Lurasidone. Once off the Lurasidone I will continue the clonazepam taper.

[Thorin]

It’s probably important to note that the feelings of weakness did not show themselves until I started reducing the Lurasidone. I had been in benzodiazepines and Lurasidone together for years prior to this with no feelings of weakness or fatigue. Just the typical tiredness that goes with taking benzodiazepines.

[Thorin]

Hi,

as requested here is a log of times i took medication and my symptoms. Seems I had a wave between 1200 and 1600 but keen to get your thoughts. I am going to keep doing this for while to see whether any obvious patterns emerge.

 

1600 finished work from home - took some CBD oil (0.6 ml) feeling fatigue/ lethargy, agitation, strong feeling of dread/anxiety, inability to feel positive emotions- this has returned since I tried to reduce my dose.

1615 Wim Hof breathing exercises- slightly reduced feelings of stress/dread and anxiety. Felt a brief moment of mild pleasure while doing the exercises.

1730- finished walk (CBD:THC (0.2ml)). Feeling slightly less agitated and stressed. Not calm though.

1900 - Lurasidone 14mg; fish oil; multivitamin, D3 and 0.2 ml of CBD/THC. still can’t shake strong underlying feeling of ‘danger/dread/stress/anxiety’.

1910- feel slight reduction in symptoms? Could be CBD/THC or psychological? Maybe taking the Lurasidone?. Still feel heavy and weak in the limbs.

1930 - Symptoms greatly reduced after really good talk with partner and processing some emotions about the severe withdrawal the other day.

2215 - clonazepam (0.125mg) and magnesium anxiety still present but much reduced

Woke up 5.30-6 after a poor sleep. Anxiety much reduced.

0800 clonazepam (0.125mg) - slight churning in stomach

0915 dextroamphetamine (3.75mg) and magnesium. Bit shaky in the legs but this is the best I’ve felt since reinstating 14mg several days ago

0945 - some ‘pressure’ and ‘sensation’ in my head. Have been experiencing this symptom for a while. It has slowly been getting better. Seems worse when I’m working/stressed. Have some mild anxiety.

1200 - anxiety increased slightly

1230 - (0.6 ml) CBD oil as anxiety increasing.

1250 had a strong wave of anxiety. Did Wim Hof breathing and took a 20 minute break from work. Anxiety decreased slightly. Some dizziness.

1300 0.125mg clonazepam and 3.75mg Dextroamphetamine

1400 still experiencing strong anxiety. Increased weakness and shakiness as the day goes on.

1530 - anxiety has reduced a bit but still strong.

1630 went for a run. Anxiety greatly reduced but still present, also a bit agitated. Running seems to improve the feelings of weakness in my body.

1715 Relatively calm. Not too many symptoms. Little restless, mildly agitated, mildly anxious.

[manymoretodays]

Good job Thorin on the Notes.  And yes, do keep doing and then post them.

You might put a date at the top, and then be consistent......I mean if you are going to go from 1600 to 1715 the next day, keep doing that. 

Or..... you could start in the am when you wake up and then go through the day and night(just making notes on awakening as to your night)

It's good for us to see about 3 days together, so we can observe if any patterns are apparent.

 

And thank you Alto!

[Altostrata]

Thank you, @manymoretodays

 

Hello, @Thorin What is your daily drug schedule? Why do you take clonazepam and dextroamphetamine together at the same time? Please put ALL your drugs in this Interactions Checker and post the report or a link to it in this topic.

[Thorin]

@Altostrata first days med schedule is already up. I take clonazepam and dextroamphetamine roughly at the same time as I was working to a schedule of reducing the clonazepam when the dex was added. My morning and midday clonazepam doses roughly coincide when with when I need to take the dose of dex. No other reason. There is an interaction between clonazepam and Lurasidone however I didn’t feel any effects that could be attributed to that until I started reducing the Lurasidone. I’ll post the report.

[Thorin]

Please see link to drug interactions report. I rarely use Clonidine as it makes me feel very weak and fatigued.

 

https://www.drugs.com/interactions-check.php?drug_list=3278-0,703-0,843-0,704-0

[ChessieCat]

From a different interaction checker https://reference.medscape.com/drug-interactionchecker

 

Monitor Closely

• lurasidone + clonazepam

  lurasidone, clonazepam. Either increases toxicity of the other by Other (see comment). Use Caution/Monitor. Comment: Potential for increased CNS depressant effects when used concurrently; monitor for increased adverse effects and toxicity.

• clonidine + clonazepam

  clonidine, clonazepam. Either increases toxicity of the other by pharmacodynamic synergism. Use Caution/Monitor. Enhanced CNS depressant effects.

• clonazepam + dextroamphetamine

  clonazepam increases and dextroamphetamine decreases sedation. Effect of interaction is not clear, use caution. Use Caution/Monitor.

• lurasidone + clonidine

  lurasidone increases effects of clonidine by Other (see comment). Use Caution/Monitor. Comment: Potential for increased risk of hypotension with concurrent use. Monitor blood pressure and adjust dose of antihypertensive agent as needed.

[Thorin]

Thanks. I only use Clonidine in severe situations as it knocks me about so much. All the other meds I’m stuck on until I can taper off slowly (I will likely continue with dextroamphetamine).

fortunately I’m below the therapeutic dose of Lurasidone and on a very low dose of clonazepam so hopefully interactions are minimal. Did not experience ANY symptoms of fatigue/weakness until I started reducing Lurasidone. Other than tapering off faster than I have been I am open to any suggestions/advice.

[ChessieCat]

Please wait for Alto to get back to you.  She might suggest that take your drugs at separate times.

[Thorin]

Ok thanks. Happy to try taking them at different times 

[ChessieCat]

Please don't change anything yet.

[Thorin]

I won’t. As urgent as it feels I’m trying to take this whole thing very slowly.

[Altostrata]

Do you take your drugs on the same schedule every day? 

 

I see your daily notes but I would like your drug schedule in a separate post apart from the other detail this one time, thank you. 

[Thorin]

Hi, sorry, would you like me to start a new topic with my daily notes or just a new post? There’s a previous post I was going to update on a daily basis with my schedule but I can start a new post again if you like? I haven’t always taken my meds at exactly the same time every day. I have started to do this for clonazepam and Lurasidone as of two days ago but dex will vary depending on when I’m working and what I have to do. Typically dex is around 0830 and 1300 Monday to Friday but not always.

[Altostrata]

No, please state your daily drug schedule, with times o'clock and dosages, in a post. We would also like to see the daily notes..