Need help rethinking clonazepam taper

[[co...]]

Friends,

Brain fog. Need help. Would mean the world.

3mg clonazepam for 18 months until starting taper 12 weeks ago. 6 weeks ago I first posted with bad sxs and was told I was going way too fast (0.25 every two weeks by doctor). So I cut it down to 0.125 every two weeks and just fighting the sxs trying to get off this thing. This weekend I reached a breaking point where it's not allowing me to take care of myself, family and job, at a current dose of 0.0625 mg.

It was suggested I go back up to where I "would have been" had I followed a 5-10% every 2-4 weeks taper schedule. (I don't even know if the percentage is of the initial dose or current dose?)

Anyways I need to slow things way down and am open to going back up some to be able to function and then slowing it wayyyy down unless there's any downsides to that like needing to find a balance between lessening withdrawal sxs and getting off fast enough to not deal with inevitable tolerance withdrawals along each interval as I go.

So can someone please help me? 

Here's my post from this weekend:

 

Edited July 20 by [co...]
clarification

[[pi...]]

Hello again,

Try not to feel you have to hurry this process. You have been taking clonazepam, a strong  benzo, at a pretty high dose, for quite a while. The goal is to make this process as tolerable as possible.

I wonder if you have a way to obtain a compounded liquid formula of clonazepam. Some of our members have done this. They are then able to make very small dose reductions. This might be a good plan for you so you can remain functional for your children and your business. 

It is best to updose to a point that you feel the symptoms are reduced. They won’t likely be eliminated, just more tolerable. Additionally, the percentage of reductions is based on the current dose. 

We do have members who are well versed in both dry cutting and liquid titration, I hope they will bring some of their knowledge and experience to help you. I will try to see who I might ask to stop by. 
 

[[co...]]

If anyone informed can help me with this I would greatly appreciate it!!

[[pi...]]

A couple of people are going to at your thread in a while. Weekends can be a little slow but we’ll get you the help you need.

[[Pa...]]

@[co...], please describe your taper method, are you cutting, shaving, weighing?

[[mo...]]

Hello, I know what you are going through as most of us do...I was on clonazepam (k) 1mg for 16 mths. They stopped working within 6 mths of starting. Dr told me to taper .125 every week or so...WRONG!!! I got to .375mg had to updose to .5 and stabilize for 4wks. Now Dr agreed to compound liquid taper at 5% of previous dose hold 2 wks. I have some rough days to power through but I'm down to .4 now. My insurance won't cover compound so it is out of pocket. I function but looking forward to having life back. I'm 68. I wish you the best.

[[co...]]

15 minutes ago, [[m...] said:

Hello, I know what you are going through as most of us do...I was on clonazepam (k) 1mg for 16 mths. They stopped working within 6 mths of starting. Dr told me to taper .125 every week or so...WRONG!!! I got to .375mg had to updose to .5 and stabilize for 4wks. Now Dr agreed to compound liquid taper at 5% of previous dose hold 2 wks. I have some rough days to power through but I'm down to .4 now. My insurance won't cover compound so it is out of pocket. I function but looking forward to having life back. I'm 68. I wish you the best.

Do you find that taper rate is allowing you to function in daily life to do what you need to do?

[[Li...]]

16 hours ago, [[p...] said:

I wonder if you have a way to obtain a compounded liquid formula of clonazepam. Some of our members have done this. They are then able to make very small dose reductions. This might be a good plan for you so you can remain functional for your children and your business. 

Hello @[co...].  What do you think the option @[pi...]suggested?  That is, using a compounded clonazepam liquid.

If you’re interested, you would need to find and vet a compounding pharmacist.  We can provide suggestions on how to do this as well as a formulation for a 0.1mg/mL compounded clonazepam suspension that many members (myself included) have used successfully.

You would also need to:

(1) Ask your prescriber if they would be willing to write a prescription for a compounded liquid. (A competent compounding pharmacist should be willing to assist your prescriber with this if needed.)

(2) Check with your insurance to find out if they cover the costs of compounding (some do, some don’t).   The good news is that your dose is low so even if you have to pay out-of-pocket, your cost should be reasonable.

Re: your current situation …

It sounds like you tapered too much, too quickly.  When was the last time you felt ‘ok-ish’?  What was your total daily dose at that time? 

In your shoes, I would consider gradually titrating back up to that dose.

[[co...]]

3 minutes ago, [[L...] said:

Hello @[co...].  What do you think the option @[pi...]suggested?  That is, using a compounded clonazepam liquid.

If you’re interested, you would need to find and vet a compounding pharmacist.  We can provide suggestions on how to do this as well as a formulation for a 0.1mg/mL compounded clonazepam suspension that many members (myself included) have used successfully.

You would also need to:

(1) Ask your prescriber if they would be willing to write a prescription for a compounded liquid. (A competent compounding pharmacist should be willing to assist your prescriber with this if needed.)

(2) Check with your insurance to find out if they cover the costs of compounding (some do, some don’t).   The good news is that your dose is low so even if you have to pay out-of-pocket, your cost should be reasonable.

Re: your current situation …

It sounds like you tapered too much, too quickly.  When was the last time you felt ‘ok-ish’?  What was your total daily dose at that time? 

In your shoes, I would consider gradually titrating back up to that dose.

I went straight back up to 1mg today and feel great and like I can function . I messaged my prescriber about the liquid compound so we'll see what happens. Otherwise I asked about 0.125 pills I could cut in half to do 6.25% cuts of 1mg every 2-4 weeks as dictated by sxs. Thoughts?

[[Li...]]

I’m glad a dose of 1mg helped @[co...].

Was 1mg the last dose where you felt ‘ok-ish’?  Or, did you perhaps feel ‘ok-ish’ at a lower dose? (If so, it’s possible you could get relief and stabilize at a lower dose before re-initiating a taper.)

What is your daily dosing schedule?  Do you take your dose once a day or multiple times a day?  Are you experiencing any signs of interdose withdrawal (i.e. withdrawal symptoms begin to emerg in between doses)?

Are you referring to the 0.125mg clonazepam Orally Disintegrating Tablets?  If so, another option to consider would be to prepare a do-it-youself liquid using milk (see more info below).  This would allow you to make smaller reductions in dose at whatever tapering interval works for you.  

ADDENDUM:

Here’s what the recently published Maudsley Deprescribing Guidelines  has say about using milk as an off-label option for patients who require smaller doses:

“Benzodiazepines are more soluble in oil or fat than in water (Macheras et al 1990).  When mixed with full-fat homogenized milk, some or all of the drug will dissolve in the milk fat.  This should form an evenly dispersed emulsion when shaken vigorously …. As stability cannot be assured, the measured dose should be taken immediately and the remainder discarded.” (Horowitz & Taylor, 2024, p. 341)

 

[[mo...]]

51 minutes ago, [[c...] said:

Do you find that taper rate is allowing you to function in daily life to do what you need to do?

To some extent. I'm a caretaker to 2 disabled family members but retired from work. I do struggle with driving and leaving house but just daily things are ok for most part

[[co...]]

1 hour ago, [[L...] said:

I’m glad a dose of 1mg helped @[co...].

Was 1mg the last dose where you felt ‘ok-ish’?  Or, did you perhaps feel ‘ok-ish’ at a lower dose? (If so, it’s possible you could get relief and stabilize at a lower dose before re-initiating a taper.)

What is your daily dosing schedule?  Do you take your dose once a day or multiple times a day?  Are you experiencing any signs of interdose withdrawal (i.e. withdrawal symptoms begin to emerg in between doses)?

Are you referring to the 0.125mg clonazepam Orally Disintegrating Tablets?  If so, another option to consider would be to prepare a do-it-youself liquid using milk (see more info below).  This would allow you to make smaller reductions in dose at whatever tapering interval works for you.  

ADDENDUM:

Here’s what the recently published Maudsley Deprescribing Guidelines  has say about using milk as an off-label option for patients who require smaller doses:

“Benzodiazepines are more soluble in oil or fat than in water (Macheras et al 1990).  When mixed with full-fat homogenized milk, some or all of the drug will dissolve in the milk fat.  This should form an evenly dispersed emulsion when shaken vigorously …. As stability cannot be assured, the measured dose should be taken immediately and the remainder discarded.” (Horowitz & Taylor, 2024, p. 341)

I would say yes 1mg. I would rather restart here and go for the slowest taper I can. Yes, the 0.125 tablets.

.0625 reduction from 1mg every 2-4 weeks would take at least 6 months to complete which to me seems much more hopeful that I can function as I need to to take care of myself, my family and my business.

[[Li...]]

Thank you for the additional information, @[co...].

Please bear in mind that if you make fixed amount reductions in dose (in your case, 0.0625mg) your taper rate will increase over time.

For example:

1mg to 0.9375mg is a 6.25% reduction whereas

0.5mg to 0.4375mg is a 12.5% reduction

Consequently, it will be important for you to monitor your withdrawal symptoms closely.  If they begin to trend upward, you may need to hold at your current dose and/or reduce your taper rate.  

The general rule of thumb used in this community is to keep reductions is the range of 5-10% calculated on the most recent dose (not the original, starting dose).  

PS To my knowledge, none of the ODTs from any of the generic manufacturers are scored.  To improve accuracy and precision (consistency) of dosing, you might want to consider using a scale.  If you find you are able to cut the ODTs into halves without loss of material, consuming the resulting pieces consecutively would increase the likelihood of ingesting all of the clonazepam in the original, uncut ODT over the course of two days.

[[co...]]

3 hours ago, [[L...] said:

Thank you for the additional information, @[co...].

Please bear in mind that if you make fixed amount reductions in dose (in your case, 0.0625mg) your taper rate will increase over time.

For example:

1mg to 0.9375mg is a 6.25% reduction whereas

0.5mg to 0.4375mg is a 12.5% reduction

Consequently, it will be important for you to monitor your withdrawal symptoms closely.  If they begin to trend upward, you may need to hold at your current dose and/or reduce your taper rate.  

The general rule of thumb used in this community is to keep reductions is the range of 5-10% calculated on the most recent dose (not the original, starting dose).  

PS To my knowledge, none of the ODTs from any of the generic manufacturers are scored.  To improve accuracy and precision (consistency) of dosing, you might want to consider using a scale.  If you find you are able to cut the ODTs into halves without loss of material, consuming the resulting pieces consecutively would increase the likelihood of ingesting all of the clonazepam in the original, uncut ODT over the course of two days.

Got it. Thanks for that. So this would be the schedule at 10% cuts of previous dose from 1mg. That's 26 cuts and if done every two weeks it would take 52 weeks, or a full year. On the most conservative side it would take two years if you did 5% every 4 weeks. Is that really how long people draw it out? I guess it's just how long someone personally needs to do it in order to tolerate the sxs? My symptoms have not been tolerable overall at my current taper. But I was going fast, like .125 every two weeks. So maybe I should just err on the very cautious side and take on this 10%/2 weeks from 1mg over a year and see if that makes a big difference? If I can function close to normal like this I would be extremely gung ho about it. Because to now I thought I would grit my teeth and push through but it's interfered with ADL and relationships. Thoughts?

Start	1.000
Cut 1	0.900
Cut 2	0.810
Cut 3	0.729
Cut 4	0.656
Cut 5	0.590
Cut 6	0.531
Cut 7	0.478
Cut 8	0.430
Cut 9	0.387
Cut 10	0.349
Cut 11	0.314
Cut 12	0.282
Cut 13	0.254
Cut 14	0.229
Cut 15	0.206
Cut 16	0.185
Cut 17	0.167
Cut 18	0.150
Cut 19	0.135
Cut 20	0.122
Cut 21	0.109
Cut 22	0.098
Cut 23	0.089
Cut 24	0.080
Cut 25	0.072
Cut 26	0.065

 

[[Li...]]

7 minutes ago, [[c...] said:

I guess it's just how long someone personally needs to do it in order to tolerate the sxs?

Yes. Each of us has to discover through experimentation what works for us in terms of the amount and frequency of reductions we can tolerate.  We use our withdrawal symptoms and functionality to guide the rate of our tapers.  Sometimes we can go faster, sometimes we need to slow things down.  Tapering is an iterative process.

[[co...]]

3 minutes ago, [[L...] said:

Yes. Each of us has to discover through experimentation what works for us in terms of the amount and frequency of reductions we can tolerate.  We use our withdrawal symptoms and functionality to guide the rate of our tapers.  Sometimes we can go faster, sometimes we need to slow things down.  Tapering is an iterative process.

It kind of sucks how it's trial and error of experiencing bad sxs if you choose to go any faster than this baseline. Would it be possible to use dry weighing by shaving pills for this schedule or does one really have a big advantage going with compounded liquid?

Edited July 21 by [co...]

[[Li...]]

11 hours ago, [[c...] said:

Would it be possible to use dry weighing by shaving pills for this schedule or does one really have a big advantage going with compounded liquid?

We have members who are using/have used the ‘shave and weigh’ technique with regular clonazepam tablets.  If memory serves, we’ve also had a few members who used this technique with the clonazepam ODTs (with the possible exception of the ODTs manufactured by Sun, my impression is that ODTs are prone to crumbling; they also are hydrophilic so touching them with bare hands or exposing them to humidity might affect their weight).

My personal preference is to use a professionally prepared compounded liquid.  It’s quick, easy, and allows me to adjust my dose as needed.

 

[[co...]]

42 minutes ago, [[L...] said:

We have members who are using/have used the ‘shave and weigh’ technique with regular clonazepam tablets.  If memory serves, we’ve also had a few members who used this technique with the clonazepam ODTs (with the possible exception of the ODTs manufactured by Sun, my impression is that ODTs are prone to crumbling; they also are hydrophilic so touching them with bare hands or exposing them to humidity might affect their weight).

My personal preference is to use a professionally prepared compounded liquid.  It’s quick, easy, and allows me to adjust my dose as needed.

Thanks! Was your provider pretty willing to giving you that script for the compounded liquid? Also what is ODT?

[[Li...]]

3 hours ago, [[c...] said:

Thanks! Was your provider pretty willing to giving you that script for the compounded liquid? Also what is ODT?

You’re most welcome. My prescriber had no issues with writing a script for the compounded liquid.  She also was fine with writing a second script for a solid dosage form - either regular tablets or ODTs - from a specific generic manufacturer taken in divided doses.

She’s one of those all-too-rare clinicians who actually listens to and believes her patients.  Consequently, she was very receptive to learning how to safely taper benzodiazepines. It also helped that I did all the upfront work for her (e.g. located and vetted a compounding pharmacist with expertise in compounding liquid clonazepam, learned exactly what my prescriber needed to do to order the compound, prepared a summary for her with the information she needed to write the script for a specific generic manufacturer).

If your prescriber would benefit from education on safe tapering, you could refer them to The Maudsley Deprescribing Guidelines (Horowitz & Taylor, 2024).

Re: ODTs …

22 hours ago, [[c...] said:

I asked about 0.125 pills I could cut in half

If you are in the US, the only dosage form that comes in a strength of 0.125mg is an Orally Disintegrating Tablet or ODT.

[[Ho...]]

You noted that you gave your prescriber specific information she needed to write script for a specific generic manufacturer. 
I currently take PAR brand .125mg ODT. Are you saying that when I start tapering and get a compounded liquid, I should ask for PAR brand of that liquid?

Thank you 

[[Li...]]

@[Ho...] Welcome back to BenzoBuddies!  I see from your posting history that you first became a member in May 2019.  As I’m sure you’ve noticed, the forum format has changed a bit since then.

We are now asking members to create and use one Tapering Strategies topic (thread) for their taper-related questions.  

Would you feel comfortable starting your own topic and asking your question(s) there?  You could use a subject heading along the lines of “Tapering Clonazepam using Par ODTs.”

To start your own tapering strategies thread:

1. Click this link: Benzodiazepine Taper Strategies (Planning)
2. Then click the ‘Start new topic’ button.

We can also move your Introductions post (as well as any other posts you deem relevant to your case) from the old forum to your new topic/thread so other members will have quick and easy access to this information. Would you like for us to do that as well?

Click this link to learn how to place your request:

Moving your old tapering thread to the new taper forum