clonazepam taper help

[[Buddie]]

Hi,
Currently on 0.5 Clonazepam 3x/day. Been on for about 13 years, starting at 0.5 once e day, and over the years increased to this. Been on this dose for 2 years. After reading the horror stories on the Facebook groups, reluctant to taper, but know that it's necessary at some point. Prior to starting any process, wondering if anyone had advice on developing a plan and the steps that should be taken. Taken for sleep issues and anxiety initially, both are still issues. Just less of an issue on meds. Does anyone know any prescribers who are benzo aware and will follow a patient-led and Ashton manual type plan?
Thanks and glad I found this group

[[Buddie]]

Have you ever felt symptoms you feel are related to the Clonazepam?  Some people can stop these drugs with little to no problem, you may be one of them.  But, due to the fact that you’ve had to increase your dose, you’re most likely dependent and may indeed need to do a slow taper.

We support the Ashton manual because Professor Ashton gave us a roadmap for tapering but we don’t necessarily subscribe to everyone converting to Valium to taper, members on long acting benzodiazepines like Clonazepam will typically taper from their benzo.  These de-prescribing guidelines are what we hope doctors will get on board with because many of them have problems with reading her manual and with prescribing Valium. Colorado Consortium Benzodiazepine Deprescribing Guidance

It’s helpful to find a benzo wise doctor but not easy to do, most members will use their doctor as prescribers and follow their body’s cues for tapering.  This organization attempts to keep a list but its difficult.  https://www.benzoinfo.com/doctors/

As far as a plan, if you’re ready, you might want to think about which dose you want to reduce first.

[[Buddie]]

It's extremely difficult to find a doctor that understands tapering and benzo withdrawal. As long as your doctor is willing to prescribe, most of us just taper by ourselves and the help of people on the forum. I just finished a two year taper of Clonazepam and my doctor had no idea how to do it. She let me do my own thing and I tapered with only the knowledge and help I gained from BenzoBuddies.

[[Buddie]]

Hi,
I'm still getting used to how to reply:) I do have a prescriber who supports Ashton and flexibility, for that, I'm grateful. Im deciding if tapering is best for me. And if a slow switch to valium is best... Doing ok with meds, occasional anxiety in between doses.  I need some guidance on why folks choose to taper. I understand benzos are not meant for long-term use. After reading harmed folks talk in various groups, I'm very scared to taper. It seems people can be injured by just getting off of these meds.( even slowly) I know everyone is different and there are many factors involved, but I guess I'm wondering what you all would do if you were at the very beginning again with a supportive prescriber. I enjoy that this group is informative, yet not fear-based.  I admire all of your strengths and value your opinions.  I know your opinions are not medical advice, I just feel stuck. Thank you!

[[Buddie]]

         When asking 2 doctors, one was an ER physician and the other, my prescriber, they both recommended rapid cuts.
This is for Alprazolam which I take 1.5 mg a day at bedtime. The ER guy said, cut the dose in half and take .75mg for 2 weeks. Then half that for 2 weeks and you'll be off. My prescriber, a nurse practitioner, was a little more conservative and said to do 25% cuts every 2 weeks. From what I've read here, it's doable, but not for everyone. Bottom line: They know how to prescribe but don't have a clue about tapering. I still haven't had the courage to start but I know it will be very slow.

[[Buddie]]

Generally we would recommend you stick to tapering your original benzo unless you experience bad interdose withdrawal. The reasoning is that many people struggle with a crossover and a different benzo. If you know you can tolerate your current benzo and you're pretty stable on it there really is no reason to risk crossing to a different one.

I'm not sure I fully understand your second question. So apologies if this answer is not what you're after. I know it's extremely scary when you start this process. It does become easier to manage the fear as you go along. When I first found out I became dependent on benzos I thought I'll just stay on it for the rest of my life. Surely that would be easier than withdrawal right?

Then I did more research. There were two issues that were highly problematic for me in this scenario 1) doctors are becoming more reluctant to prescribe. I never had a problem getting benzo's but what if in 10 years I ran into issues? Then sure as hell, not even one month after I made the decision to taper the doctor who got me on these pills cut me off! I had to find a new prescriber. I cannot tell you how horrifying that is.
2) I read about tolerance withdrawal. I don't want to scare you but this is just the reality of benzo's. The longer you stay on these drugs there's an increased chance you'll automatically start experiencing withdrawal symptoms at your normal dose. If this happens the only real option is tapering off and then it will be so much harder because you're already in full-blown withdrawal. So for me I was going to make the decision myself and not let the drug make it for me.

I was lucky because I found a very supportive doctor to prescribe. She was amazing. I was functional for my entire taper. I'm now about 2 months off and feel the same as I did while tapering. I'll do most things the same as I'm not feeling too bad.

[[Buddie]]

Jelly Belly,
That makes sense. You did answer my second question, thank you. I do think the tolerance withdrawal is approaching and starting with increased anxiety. ( I did quit smoking 1/13/23)- so I'm not sure if that is the cause for the increased anxiety or if it its the meds not working as well.

How do you manage to figure out tapering? Clonazepam is tricky. I liked that valium has many dosages and has longer half-life. The idea of the math alone involved is overwhelming.

Does anyone have questions I should ask the prescriber I'm set to meet with in  a few weeks? She will be a new prescriber to me as my current thinks 25% cuts are reasonable.I know she isn't knowledgeable in withdrawals, so I thought I best seek someone else out who is.

A

[[Buddie]]

The long half-life of Valium is only helpful if you cannot manage interdose withdrawal from Clonazepam. Clonazepam has a pretty long half-life too. Many people on Valium cannot handle the Ashton reductions as they're too big and they have to do the maths, weighing and filing as well. I personally don't think the risk of crossing over is worth it just for the convenience of tapering.

Most people start by weighing and shaving their pills. The math is not too complicated once you understand the principle.

[[Buddie]]

Hi Jelly bay. I’m still battling severe long Covid, so I have needed to wait to initiate a taper for myself. The effects of this syndrome are enough for my body and mind to handle right now.
I am on 1 mg clonazepam and have been for 14 years. I plan to go slow! I too worry about my current physician retiring and then what? So I would like to address this while she is still practicing because I believe she will be helpful.
I found a Compunding pharmacy who does do a liquid clonazepam formulation quite often. I was relieved because the dry cuts and math made me extremely anxious.
My concern is having a prescribed to write out Rxs for liquid and continuing to do this as I taper. I know the tablets would be easier as I could do it without really needing her to change anything for me, but the scale and measuring etc just plays with my head very intensely. Do you know if people run into problems having a liquid Rx sent in versus the tablets? I’m not wanting to approach my physician about this until I’m ready and long Covid can take a very long time to recover from

[[Buddie]]

I'm not sure I understand your question and what problems you're referring to regarding liquid prescriptions.

Libertas has compiled a set of questions to vet your pharmacist and it also contains a link to a document with a suggested liquid compound suspension. This should help you.

Below are suggestions on how to find and vet a compounding pharmacist as well as a link to a stability-tested formulation for a compounded clonazepam suspension (your compounding pharmacist may have access to other formulations so be sure to ask).

Finding and Vetting a Compounding Pharmacist:

(1) Gather leads.

- Ask your prescriber.
- Ask your pharmacist.
- Contact pharmacies associated with hospitals (especially children’s hospitals) as well as those that work with long-term care facilities.

(2) Begin the vetting process (online search).

- Does the pharmacy specialize in compounding?
- Is the pharmacy USP 795 compliant? USP 797 compliant?
- Is it accredited (e.g. PCAB)?
- Does it belong to one or more professional associations (e.g. PCAA)?
- Is there any evidence the pharmacy has ‘issues’ (e.g. unhappy customers, quality concerns, business problems)?

(3) Continue the vetting process by contacting the pharmacy. 

Ask to speak to the lead pharmacist not a tech.  Explain that you are looking for a compounding pharmacy to work with long-term on a gradual, symptom-based taper from whatever benzodiazepine you are taking.  (Compounding pharmacies are businesses.  Learning that you are a potential long-term customer should get their attention.)

Questions to ask:

- Do you have access to a stability-tested liquid formulation for my benzodiazepine? Does the formulation yield a solution or a suspension? What is the concentration? What are the ingredients?
- What does the formulation use as the drug source? API (active pharmaceutical ingredient) or commercial product (tablets, capsules)?  If the latter, will you be willing to use tablets/capsules from my current manufacturer?  Would you be willing to set aside a bottle for use just in my compound?  Would you be willing to let me know when there is a batch change?
- Do you or a member of your staff have experience preparing this formulation?
- What steps would you take to ensure that the liquid you prepare will have consistent properties from batch to batch?
- Will you fit the dispensing bottle with an appropriately sized press-in bottle adapter to make it easier to measure the liquid?
- Will you provide me with high quality oral syringes with the appropriate nominal volume and graduations to measure the liquid as accurately as possible? Will you instruct me on how to properly use these devices?
- Will you be willing to help me with math if needed?
- My prescriber does not have experience with compounding. Would you be willing to tell me exactly what s/he would need to write on the prescription?
- Can you give me an estimate of how much my out-of-pocket cost will be per fill?  With my insurance?  Without insurance?
- Do you offer a discount program for long-term customers?

Link:
0.1mg/mL Clonazepam Oral Suspension from Nationwide Childrens Hospital
https://www.nationwidechildrens.org/-/media/nch/specialties/pharmacy/compounding-formulas/clonazepam-oral.ashx