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.

Liked by sears

My personal opinion is that doctors are now and will be even more pressured to taper their patients. I saw it coming awhile back with my doctor. I told him I wanted to start tapering Xanax. I wanted to start on my own and not be forced into a taper. Long story short he basically abandoned me and it took forever to find a new doctor to assist In a slow taper. I’m still trying to stabilize after the trauma of having to find a new doctor after 25 years and what I had to go through to find a new one. I wound up in the hospital for 3 days. I do think the day is coming just like the opioids. I’d like to hear others opinions on this.

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@sears

My personal opinion is that doctors are now and will be even more pressured to taper their patients. I saw it coming awhile back with my doctor. I told him I wanted to start tapering Xanax. I wanted to start on my own and not be forced into a taper. Long story short he basically abandoned me and it took forever to find a new doctor to assist In a slow taper. I’m still trying to stabilize after the trauma of having to find a new doctor after 25 years and what I had to go through to find a new one. I wound up in the hospital for 3 days. I do think the day is coming just like the opioids. I’d like to hear others opinions on this.

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Thanks for the reply, sears. My doctor believes (and I am inclined to agree with him) that this has nothing to do with patient safety. As always, one should "follow the money", he says. Groups (I won't say who he suggests) are putting pressure on government bodies with campaign contributions to get people off the legal stuff in hopes of pushing them to the streets. I believe that, just as with hydrocodone, previously a Schedule 3 which was rescheduled to Schedule 2 in 2018, benzos, currently Schedule 4, will be put into Schedule 3 and then to Schedule 2 and when that happens the Fed will do what it did to physicians who were prescribing Schedule 2 painkillers: pay any doctors who are prescribing benzos a visit and in a very forceful way, explain to them that if they continue prescribing benzos they will be at risk of losing their license to practice medicine.

I don't want to turn this into a political discussion. I'll just say I don't like the direction this government is pushing people who depend on such medications for their quality of life. I am in a position where if doctors threatened to cut me off completely unless I involuntarily agreed to a taper program (and benzos taken for years cannot be weaned down in a matter of months–it literally can take years) then I would be forced to look overseas for countries that might have much more relaxed laws for foreigners who are bringing in retirement money to spend in their countries. That's a worse case, but like you I can see the writing on the wall and I won't wait around hoping things get better because I saw what happened to chronic pain patients and how the rates of suicide skyrocketed when they were cut off and I don't want to be any part of that.

Liked by sears, katyripp1967

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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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I feel for you, sears. I am pushing 70 and it's crazy the Feds have not tried to exercise some judgment in who they subject this change in law to. People older than 65 should be given some leeway instead of being lumped in with 20 year olds who SHOULD be taken off these drugs. The bottom line is shortly no one in the United States will have access to these psychotropics. I mean what's next? Insulin? Interesting side effect of these de facto bans on tranquilizers/painkillers: more suicides save billions of dollars for Medicare/Social Security.

Liked by sears

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@jackt

I feel for you, sears. I am pushing 70 and it's crazy the Feds have not tried to exercise some judgment in who they subject this change in law to. People older than 65 should be given some leeway instead of being lumped in with 20 year olds who SHOULD be taken off these drugs. The bottom line is shortly no one in the United States will have access to these psychotropics. I mean what's next? Insulin? Interesting side effect of these de facto bans on tranquilizers/painkillers: more suicides save billions of dollars for Medicare/Social Security.

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I think you may have a point unfortunately.

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@jackt

Thanks for the reply, sears. My doctor believes (and I am inclined to agree with him) that this has nothing to do with patient safety. As always, one should "follow the money", he says. Groups (I won't say who he suggests) are putting pressure on government bodies with campaign contributions to get people off the legal stuff in hopes of pushing them to the streets. I believe that, just as with hydrocodone, previously a Schedule 3 which was rescheduled to Schedule 2 in 2018, benzos, currently Schedule 4, will be put into Schedule 3 and then to Schedule 2 and when that happens the Fed will do what it did to physicians who were prescribing Schedule 2 painkillers: pay any doctors who are prescribing benzos a visit and in a very forceful way, explain to them that if they continue prescribing benzos they will be at risk of losing their license to practice medicine.

I don't want to turn this into a political discussion. I'll just say I don't like the direction this government is pushing people who depend on such medications for their quality of life. I am in a position where if doctors threatened to cut me off completely unless I involuntarily agreed to a taper program (and benzos taken for years cannot be weaned down in a matter of months–it literally can take years) then I would be forced to look overseas for countries that might have much more relaxed laws for foreigners who are bringing in retirement money to spend in their countries. That's a worse case, but like you I can see the writing on the wall and I won't wait around hoping things get better because I saw what happened to chronic pain patients and how the rates of suicide skyrocketed when they were cut off and I don't want to be any part of that.

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Jackt. The government want senior citizens to go find drugs off the street? Can you clarify?

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@sears

Jackt. The government want senior citizens to go find drugs off the street? Can you clarify?

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No, no that's not what I said, or meant to say. What I was saying was that the government, by making it near impossible for people who have a legitimate need for them to get access to these drugs, will inadvertently, push people to the streets to get what the people need in order to keep their quality of life at a subpar level. People who live in fear of blind panic descending will do almost anything to avoid having it. That's not the case so much with seniors, who have no street smarts to be able to navigate the mean streets as it is with young people who do. And I don't want to say anymore about this, sears because I don't want to turn this into a political discussion.

Liked by sears

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@jackt

No, no that's not what I said, or meant to say. What I was saying was that the government, by making it near impossible for people who have a legitimate need for them to get access to these drugs, will inadvertently, push people to the streets to get what the people need in order to keep their quality of life at a subpar level. People who live in fear of blind panic descending will do almost anything to avoid having it. That's not the case so much with seniors, who have no street smarts to be able to navigate the mean streets as it is with young people who do. And I don't want to say anymore about this, sears because I don't want to turn this into a political discussion.

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I understand Jackt. Thank you for the clarification. You made a very interesting point.

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I am 63 and have taken clonazapam since 1997. I take 1.0 a day and am able to take another.5 in afternoon if I feel the need. My psychiatrist has never said I will need to taper. I have talked to him and he says it works and all good. Three months ago he did add buspiron as I have had some serious stress and anxiety. I have not heard anything about clonazapam being taken less like opioids. Where are you hearing this? My visits are scheduled every three months for renewal of prescription. He says he is required a face to face to renew but I have gone six months at times.

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Elina, read the internet, newspapers, etc. Benzos are becoming the next “opioid crisis” the government is starting to get involved. At some point Benzos will not ever be prescribed for more than two weeks.

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@elina1

I am 63 and have taken clonazapam since 1997. I take 1.0 a day and am able to take another.5 in afternoon if I feel the need. My psychiatrist has never said I will need to taper. I have talked to him and he says it works and all good. Three months ago he did add buspiron as I have had some serious stress and anxiety. I have not heard anything about clonazapam being taken less like opioids. Where are you hearing this? My visits are scheduled every three months for renewal of prescription. He says he is required a face to face to renew but I have gone six months at times.

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In California where I am a dr cannot write a script for more than 120 pills. If it's a phone in a month at a time then maybe that can be stretched to 6 months. I don't like to do call-ins because sometimes the staff forgets to call it in and if I am on a Friday with my last pill I have to go the weekend without anything. That's horrible. As to the other, I'm reading a lot on the Internet and seeing news episodes "Are Benzos the Next Opioid Crisis?" obviously people in high places are trying to make benzos into a taboo medication that dr's shouldn't prescribe just like they did with the painkillers. I feel it is just a matter of time.

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@jackt

In California where I am a dr cannot write a script for more than 120 pills. If it's a phone in a month at a time then maybe that can be stretched to 6 months. I don't like to do call-ins because sometimes the staff forgets to call it in and if I am on a Friday with my last pill I have to go the weekend without anything. That's horrible. As to the other, I'm reading a lot on the Internet and seeing news episodes "Are Benzos the Next Opioid Crisis?" obviously people in high places are trying to make benzos into a taboo medication that dr's shouldn't prescribe just like they did with the painkillers. I feel it is just a matter of time.

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Would anyone from Mayo like to respond to Will Benzos become the next opioid crisis?

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Hi, @jackt – first of all, I'd like to invite some others into this conversation about the potential stricter regulation by the medical field when a patient is taking a benzodiazepine such as clonazepam, which you are taking and noted is now requiring much more frequent doctor visits to continue the prescription, even though you have no side effects, have had good results and been at a stable dosage for years. Please meet @jakedduck1 @grandmaj5 @georgette12 @helenfrances @elwooodsdad @jimhd.

jackt – have you seen further evidence that the clonazepam is being more strictly regulated since you mentioned this issue in December?

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@jackt @sears

So far, my morphine sulfate contin and Clonazepam are the only meds I take that have to have a fresh prescription monthly. The morphine prescription is tid, and I try to take it only once or twice a day. My Clonazepam is 1mg bid, but I rarely take the second one. I keep a close eye on refill timing and send a message to my doctor a few days ahead of the renewal date, and he submits e-pre scriptions to my mail order pharmacy. An extra help is that the pharmacy sends me notices when I need to refill or renew a scrip. I'm supposed to visit my PCP monthly because of the ms contin.

So I have to stay on top of my meds more than I used to. I try to work it out so that I'm a month ahead. Knowing that there could be stricter regulations down the road, I like to be prepared. I've been cut back from 30mg tid to 15mg tid on the morphine, and it could be a problem getting more oxycodone for break through pain when I use up what I have. I save it for when my back hurts so much that I can't function or sleep. That's pretty rare.

I'm glad that I have an existing long term chronic pain treatment with morphine. Getting something like that is probably hard to set into motion now. Doctors and pharmacies will only give a 7 day for post surgery pain, and I don't know what happens to people whose pain moves from acute to chronic pain. It's becoming a real hardship for lots of people.

Jim

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I'm also 69, @sears @jackt I haven't heard anything about tapering off Clonazepam, either from my PCP or psychiatrist. It's down to a single month prescription of 60 pills, from a 3 month prescription not long ago. I can't imagine having to stop it. I started taking it in 2006, and have taken a second pill a very few times, and it's controlled my anxiety for the most part. At least importantly is the off label benefit of keeping my legs still at night. For my wife's safety, my doctor agrees that I need to continue taking it.

I've had major depression for a long time, was diagnosed in 2002, and diagnosed in 2006 with anxiety disorder, OCD and PTSD in addition to depression. I made several suicide attempts in 2005, and the suicidal ideation continued for around 5 years. I still am only marginally safe because the thoughts are always present, and I honestly don't know how I would handle being denied either the psychotropic or the chronic pain meds. I think about how I'd be able to get medications, but the options aren't good – the streets or other illegal sources or other countries? – I don't really know. I just hope that it doesn't come to that.

Jim

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