My clonazepam story: More regulation seems to be coming

Posted by jackt @jackt, Dec 10, 2019

Serious auto accident 18 years ago. Operated on for a double subdural hematoma. Started experiencing extreme myoclonus a few months later. Put on clonazepam 1 mg/day to control it. C worked very well. Never had to increase dose. Still on 1 mg/day today and very happy with the results. No myoclonus.

Physician I have been with these last 18 years now is starting to increase visits. When all this started it was once every 6 months, then a few years ago increased to once every 4 months, then 3 months, now a year later he just told me he has to do it every 2 months. I can see the writing on the wall. Pretty soon it will be once every month. It's grueling to go to an appointment, usually takes 2.5 hours to get through the whole thing just for a 10 minute "What's new?" friendly chat and then the prescription. It's private pay so this is going to cost quite a bit if I have to do once a month, not to mention the 20 minute drive and $10 parking.

Long story short, hopefully. I'm very happy with the status quo. I have no side effects. Haven't had any to increase the dose. I'm 69 and what's my life expectancy, 8 years?? I'd be very happy to just stay on the C until I die of natural causes presumably around 78 according to life expectancy actuarials. It's the DEA that's upsetting the applecart with this witch hunt they're starting on benzos after having decimated hundreds of thousands of CPP's lives with their opiate crackdown by intimating doctors with prison and loss of their license. My pharmacist suggested my doctor is probably trying to ease me out his door to get rid of me. I tend to agree. But going to a new doctor is going to be very difficult with the climate against benzos now. Channel 4 Evening News is already labeling benzos, "The Next Opiate Crisis?" in a series of reports.

I'm in California and the laws are not too strict here, but is the DEA going to start forcing doctors to get their patients off benzos now like they did with the painkillers? What about people who need this medication because of TBI (traumatic brain injury)? is there anybody else out there who is thriving on the benzos but is being pressured by their doctors to either taper or leave? I would like some guidance on how to weather this storm.

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@slydell

I was on 6mgs of Xanax daily.
Now down to 2 mgs daily.
You are so correct about the DEA and the upset. The Dr's don't know what to do. Some say "Stay on", some "You have to come off".
How do we trust them?
It's been a roller-coaster ride for me since April when my Dr lost his license and I had to find another Dr. to prescribe the Xanax. I am still going through hell.

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The doctors that say”stay on” just don’t want to deal with a bunch of patients withdrawing from Benzos. It’s easier for them. They just want to write a script, send you on your way and get paid a whole lot of money. Everybody’s happy. You’re very lucky you found another doctor to give you a Xanax prescription.

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Am not sure this is correct place to mention but was on Clonazepam 15 plus years then few years ago dr tried to take me off, long story short, back on but months ago told the Rivotril (name brand in Canada) was no longer available and it would be generic; so every month when get prescription refilled it seems the pills are from a different manufacturer.... today it is Mfr: PMS.

I use to like getting brand name and told pharmacist if insurance etc. didnt pay full cost I would. So... today for 30 tab Pms-Clonazepam-R 0.5 mg the cost of the tablets was $1.35 Canadian (would that be around $1 USA?)... fee to dispense $8.83, - Ontario drug benefits $2.72 paid and my insurance paid $4.01 !!! My cost $3.45.

Am I wrong in being leery of a medication so potent, generic, that cost $1.35 for 30 pills - is that about 4 cents a pill? I know I should be grateful they dont cost me more but.... Given the extremely high cost of some of my spouse's meds? How can the company and the pharmacy make money on this anyway? Why are they so inexpensive?

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I’m not sure if I can answer your question completely, I use a med for depression and it was always the same…on one occasion I picked up my script and I was told that they were from another manufacturer but they are the same drug, they looked different in shape and size but the colour was the same…within two weeks I was sick and unable to function properly…I found out that they used another generic brand…I appreciate that they have generics because they can save you some money but they are not all the same, they use different ingredients or what they call fillers and sometimes you can get a reaction to it…the prices vary because some ingredients are less expensive and that’s why you have a price difference…you can ask the pharmacy to give you the original brand if you want but if the generic brand is working then you are doing well.

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...a long time ago, a Pharmacist in the business for years told me that generic were "ok" BUT that if someone had been on the "brand name" meds for a while and then switched to generic, they would notice.
I have advised Pharmacist when first started going there in 2016 that I preferred Name Branch and if any extra cost I would pay, but little by little, as my spouse's numerous pills, they have been replacing name brand with generic. Also I was old the manufacturer of the name brand Clonazepam/Rivotril in Canada no longer produces them so each month it seems to be from a different manufacturers - and another pharmacy told me they "shop around" for the cheapest price they can get when purchasing the drugs! Definitely the "fillers" and coatings/dyes etc. can vary from one manufacturer to another and for them to state : it's the SAME drug means nothing if we are allergic to the non-medicinal ingredients! Ugh!

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@lacy2
First, you asked, “How can the company and the pharmacy make money on this anyway?” Pharmacies actually make more money by dispensing generic prescriptions.
Klonopin, the brand name in the US for clonazepam was developed as a safer alternative to barbiturates to treat seizures and other issues.
I have taken Klonopin and you can have it. I’ll take a barbiturate any day I’ve taken phenobarbital for at least 50 years, and certainly would never exchange it for a benzodiazepine anticonvulsant. I’ll take a barbiturate any day I’ve taken phenobarbital for 50 years. My barbiturate phenobarbital is generic and always was but I do get the same manufacturer every time.
If brand and generic are identical as so many doctors and pharmacists insist they don't know the definition of identical. And if, in fact they were identical, why was I not having seizures at home taking brand name drugs then in hospital on generics started having seizures.
A study on Epilepsy ( my nemesis) drugs at Stanford University Medical Center in California found if you take generics always use the same manufacturer. If taking generics don't switch to brand and if taking brand don't switch to generics. My Neuro refused to prescribe generics to seizure patients but it’s been so long ago I forgot his reasons. but it’s been so long ago. I forgot his reasons he wrote a letter once a year to my insurance company to make sure they paid for brand-name drugs.
https://www.merckmanuals.com/home/drugs/brand-name-and-generic-drugs/bioequivalence-and-interchangeability-of-generic-drugs
Take care,
Jake

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@lacy2

...a long time ago, a Pharmacist in the business for years told me that generic were "ok" BUT that if someone had been on the "brand name" meds for a while and then switched to generic, they would notice.
I have advised Pharmacist when first started going there in 2016 that I preferred Name Branch and if any extra cost I would pay, but little by little, as my spouse's numerous pills, they have been replacing name brand with generic. Also I was old the manufacturer of the name brand Clonazepam/Rivotril in Canada no longer produces them so each month it seems to be from a different manufacturers - and another pharmacy told me they "shop around" for the cheapest price they can get when purchasing the drugs! Definitely the "fillers" and coatings/dyes etc. can vary from one manufacturer to another and for them to state : it's the SAME drug means nothing if we are allergic to the non-medicinal ingredients! Ugh!

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This is so true. Thanks for your input.

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I am on 1 mg of Clonazepam and have been for 15 years the side effects are horrible I want off and my psychiatrist is reluctant because he feels I have very high anxiety!! I have been doing so much research and it’s the drug giving me the anxiety along with horrible side effects I have read that you need to taper very slowly. How?? Any advice would be greatly appreciated

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@rrc

I am on 1 mg of Clonazepam and have been for 15 years the side effects are horrible I want off and my psychiatrist is reluctant because he feels I have very high anxiety!! I have been doing so much research and it’s the drug giving me the anxiety along with horrible side effects I have read that you need to taper very slowly. How?? Any advice would be greatly appreciated

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Reduce by 5-10% monthly, if tolerated, slower if necessary. You can try to dry cut and weigh the pills, or you can do a liquid taper. Google Ashton Manual, free and downloadable, it's all in there. Your psychiatrist is showing his age. It has been known for a while that long term benzo use causes tolerance, dependence, an increase in the very symptoms it was prescribed to treat. I'm sorry for your trouble. I'm right there with you, failed first attempt, miserable.
Best ~

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I’m on the same medication and also prescribed YEARS AGO after a dr noticed my panic attacks while in the waiting room for other health related business.

25 years later, here we are. It’s a monthly challenge to fill the med, even though I have never ever used more than what I’m prescribed. I don’t ask for refills early. I don’t count my pills, and I do have addictive tendencies.

I’m not inclined to abuse benzos.

People abuse EVERYTHING. Who will save us all FROM OURSELVES? The FDA will sell us pharmaceutical products from anywhere on the globe.

Seems they have international oversight and are making rules for the WHOLE WORLD.

They are EVEN HUNGRIER since the covid bonanza !

Hopefully some common sense will be given to this new generation of body dysmorphic people coming of age/power.

Hopefully they will be able to take care of their peers more kindly and compassionately.

Common sense has no place in the current circumstances.

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@sears

I’m just so sad and sorry I suffer from a mental disorder that required me to even begin taking medication. I’m now 67 years old and see my life getting worse by the day. Tapering a benzo for years at my age? I’m trying but my life is miserable and sad.

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Dear @sears, I'm truly sorry you're feeling so unhappy, I honestly know what you feel like,
I too have been feeling really awful but it's also complicated by family issues and other emotional issues that have a profound effect on how well you fare when you feel like loosing it and saying I've had enough. I have been tapering from Ativan for years which is just a brand name for benzos and yes it's it's an ongoing process that can take month, even years to stop, however as we all know the people who make decisions about these drugs don't really care about who they hurt in the process...sadly,history has taught us that when you take something away from people, they will find other sources, this is the real danger or threat that faces those of us who need more help with the meds. The more you dwell on the scary aspects, the more difficult it gets to slow things down. That's what I find the tough part getting myself on a steady routine and feeling stronger, even a little prouder that you've got control of this but then wham, something comes along as it always does in life and you just get thrown, of course I realize I have to carry on but that sure is easy to say, nothing worthwhile comes easy. I am grateful for the good days and make the best of it and I try not to think too far ahead because at age 72 I learned, along with many other things, that nothing ever goes the way you think it's going to go., thank God for that.

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