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“The FDA recommended an updated boxed warning and standardization of product labels across the drug class. They recommended judicious prescribing and a gradual taper to mitigate withdrawal reactions. While I am optimistic about these changes, the updated warning doesn’t tell the whole story. After reviewing the newly updated Xanax Medication Guide, I have some concerns.”
Christy Huff is a cardiologist and co-director, Benzodiazepine Information Coalition. She can be reached on Twitter @christyhuffMD.
She shares her story and discusses her KevinMD article, “The updated benzodiazepine boxed warning: What you need to know.”
This episode is sponsored by the Substance Use Disorder Treatment and Recovery Loan Repayment Program. Would you like to help communities recover from the opioid epidemic? If you said yes, and you are a behavioral health professional or paraprofessional, then I have great news for you. Receive up to $250,000 in student loan repayment in exchange for service in a community disproportionately affected by the opioid crisis. Learn more and apply to join STAR LRP, the Substance Use Disorder Treatment and Recovery Loan Repayment Program. Applications close on July 22.
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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.
Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Christy Huff. She is a cardiologist, and she is co-director of the Benzodiazepine Information Coalition. She wrote the KevinMD article “The updated benzodiazepine boxed warning: What you need to know.” Christy, welcome to the show.
Christy Huff: Hi, Kevin. Thanks for having me here.
Kevin Pho: So we’ll get into your article in a little bit, but first off, can you share your story and journey to where you are today?
Christy Huff: Sure. So I started off as a cardiologist, and I was in private practice in 2011. After that, I was out for a few years because I wanted to stay home after the birth of my daughter, and I had plans to go back to work after she was in kindergarten. But unfortunately, all that was derailed when I was prescribed Xanax. I was having a medical crisis back in 2015, and they just wanted to give me a temporary prescription to kind of get me through it. I was having trouble sleeping.
Unfortunately, within a few weeks of just taking a low dose, I became physically dependent on the medication, and I began to experience something called interdose withdrawal, which means that because of the short half-life of Xanax, I was having withdrawal symptoms in between doses. At first, nobody knew what was going on. I didn’t, and neither did my doctors. I went through a lot of medical testing, and then later on, since everything turned up normal, they just assumed I was having anxiety.
I finally figured out what was going on with me just by an internet search. I found BenzoBuddies, which is a community of patients online that are helping each other and supporting each other through benzodiazepine tapers. What I read there was pretty shocking. It confirmed the diagnosis in my mind that what I was experiencing was related to Xanax and that I needed to come off of the medication if I were ever going to get better.
Specifically, I read about the Ashton Manual there. Heather Ashton was a British psychopharmacologist in the ’80s and ’90s, and she ran a benzodiazepine prescribing clinic, and she followed patients coming off these medications. The manual is basically the combination of her work. It describes the benzodiazepine withdrawal syndrome and also has protocols for coming off the medication.
So I took this information back to my doctors, and I was actually met with a lot of resistance. I went through several doctors before I could find someone to help me, and I know in retrospect now, from the work that I do, that this was because there’s a big knowledge gap with physicians surrounding benzodiazepines. So eventually I did find a doctor to help. We transitioned me over to Valium, because the long half-life helps cover that interdose withdrawal that I was experiencing, and I was able to taper off the medication. Unfortunately, it was a very prolonged and difficult taper. It took me over three years to come off the medication, and it was utterly disabling.
After my experience, I decided I really needed to speak up, because I’m not an isolated case. I met many other patients along the way who were suffering the same thing, who felt like they weren’t getting medical support, and they were having really difficult withdrawals. So in 2017, I became director of the Benzodiazepine Information Coalition, and it’s a nonprofit that educates about the adverse effects of benzodiazepines. I specifically advocate for better physician education on these issues, informed consent for patients, and then safe prescribing and prescribing practices surrounding benzodiazepines.
Kevin Pho: So you were prescribed Xanax for a few weeks to help you sleep, and you started feeling these interdose symptoms. So tell me exactly, what were you feeling in between your Xanax doses?
Christy Huff: Yeah, that’s a good question. So at first, things were pretty subtle. I developed a tremor, and I developed anxiety, and it was kind of strange because the anxiety always seemed to show up in the afternoon, but I didn’t really, you know, place the timing of it. Then, as things progressed over the next couple of months, I was undergoing all these medical tests, and I just continued to get sicker.
And so the symptoms progressed to the point where the Xanax dose would only last for about two hours, and then I would be in florid withdrawal. I felt like I had an elephant sitting on my chest. I couldn’t breathe, I couldn’t swallow, my heart was racing, and I was only sleeping three hours a night. So it just progressively got worse over a couple-month period.
Kevin Pho: Can you share what your initial dose of Xanax was?
Christy Huff: Yeah, so I initially started taking 0.25 milligrams just at night to sleep. I was prescribed to take 0.5 milligrams three times a day as needed. And then, as I developed this daytime anxiety, my doctors actually encouraged me to increase the Xanax dose. So before I figured out what was going on, my Xanax dose was up to one milligram a day at most.
Kevin Pho: And you mentioned you went to your doctors with these symptoms, and they were hesitant to take you off the Xanax. What did they tell you to do instead?
Christy Huff: Yeah, so they told me a lot of different things. I was pretty adamant at first that I needed to come off of it. So, you know, one thing they did, they started me on an SSRI to help treat the anxiety so I could hopefully get off the Xanax. Unfortunately, that actually made my anxiety level go through the roof. I just couldn’t tolerate it.
You know, I had one provider tell me that there’s no way I could be dependent on Xanax and that I could just stop it cold turkey and it would not be a problem. Of course, I had already tried to come down on the dose by myself, and the withdrawal symptoms were just too strong. So I was told a lot of things that weren’t correct, unfortunately.
Kevin Pho: So let’s transition now into the KevinMD article that you wrote. This was back in March. It’s titled “The updated benzodiazepine boxed warning: What you need to know.” Now, for those who didn’t get a chance to read that article, can you just walk my audience through it and share the story of why you decided to write it?
Christy Huff: So in September of 2020, there was an update to the current benzodiazepine boxed warning, and it was to warn of the serious risk of addiction, abuse, physical dependence, and withdrawal reactions. For those of you that might not know, there already was a benzodiazepine boxed warning since 2017 for combination with opioids, and this was just an update to add these other risks.
So the reason I wrote this is it happened in the middle of the pandemic, and so I really didn’t want it to fly under the radar. I do think this information is timely because benzodiazepine prescriptions have actually risen during the pandemic, and also the pandemic has, you know, generated a mental health crisis of sorts. So, you know, we need to pay attention to what’s going on with benzodiazepines.
You know, when I saw this boxed warning, I was really excited, because some of the things that are in the warning, benzodiazepine safety advocates have been saying for years. I wanted to write about the things that they got right and also what I perceived as still lacking in the warnings. The reason the FDA released these warnings is that they put together a task force of sorts to review, you know, issues surrounding benzodiazepines, and what they found, you know, showed evidence that they needed to strengthen the warning labels. And I was specifically able to obtain the task force report by Freedom of Information request. It was a 175-page report that I read through.
And, you know, when I was writing this article, I wanted to look specifically at the issue of physical dependence and withdrawal, just because there seem to be a lot of misconceptions and miseducation surrounding these issues. Of course, addiction and abuse are problems with benzodiazepines, but as they noted in the FDA warning, they are more likely to be seen in the setting of, probably, polysubstance use, and not so much in the populations of patients, you know, like me, that were just taking them exactly as prescribed.
So I did start the article with the story of Bobbi. She’s a physician assistant who developed side effects from her prescription clonazepam and was forced into medical detox by her state medical board. She was taken quickly off the drug, and she developed severe neurological symptoms that were disabling, and eight years later, she hasn’t been able to go back to work. I used the story because I wanted to illustrate how severe the benzodiazepine withdrawal syndrome can be, and I also wanted to share about the FDA Adverse Event Reporting System, because I actually helped Bobbi file a report. She really wanted to share her story, but she was unable to type it in herself. And it’s so important that we, you know, report any kind of adverse event like this to the FDA so that, you know, they can change warning labels if needed.
So as far as their findings, I just picked out a few of the interesting findings that I think gel with what we see in advocacy, you know, specifically regarding physical dependence and withdrawal. Their findings were based on 104 cases that were reviewed from that database, and here are a few of the things they found. They found that adverse events can and do occur at therapeutic doses. You know, you don’t have to be abusing the medication or taking high doses. Withdrawal can also be a very long process. It can be years in some cases, like what happened to me.
And specifically, I was very excited to see the mention of protracted withdrawal, because up until this point, it hasn’t really been documented, and patients suffering from it haven’t been, you know, believed, because there’s just not a lot of awareness on that issue. They also found that physical dependence can occur in days to weeks, which is what happened to me, and that abrupt and over-rapid tapers are harming patients, you know, patients just like Bobbi. And they did note in their report that physician education is lacking in this area.
So, you know, the upshot of the warning: You know, the FDA had specific recommendations for judicious prescribing of benzodiazepines, which means use the lowest dose for the shortest time possible or use alternative drugs, and, for deprescribing, to use a gradual taper. I think these are great recommendations and something that we can all really get on board with, but I do think the warning label could be even stronger, you know, just based on my experience and what I’ve seen during my advocacy work.
So, you know, first of all, they said do a gradual taper, and it’s good that they specify that it should be based on patient symptoms, but they really don’t give a lot of guidance or any sort of protocols on how to taper patients off safely. The other thing is they don’t really note that gradual tapers don’t always completely remove withdrawal symptoms. You know, I had a long, slow taper, and I still suffered symptoms during that time.
And the last thing, which is, you know, very important, is protracted withdrawal. If you look at the language in the warning, it appears that it’s rare, but in Ashton’s work, she says between 10 to 15 percent of people coming off long-term benzodiazepines will experience this protracted syndrome. So it’s not a small number of people, and there’s really no inkling about how disabling the syndrome can be as well. You know, we think this protracted syndrome is related to neurologic damage just from prolonged use of the drug. It can take years to resolve and even potentially be permanent in some cases. And unfortunately, the research in this area is scarce, and we just need more so that we can figure out, you know, how we can prevent people from suffering the syndrome and how to treat it if they’ve developed it.
Kevin Pho: So I’m an internal medicine primary care physician, and I have some patients on benzodiazepines. In terms of the gradual taper, what exactly would a gradual taper look like?
Christy Huff: It’s going to differ with the individual. I would say that if you look at feedback from the online benzodiazepine support groups, they’re saying that less than 5 to 10 percent of the current dose monthly is a good taper rate. Now, some people are going to be able to go faster, and some are going to have to go slower. And then, you know, as far as the timing, it could take many months. It could even take years. But I think the big take-home message is you really want to taper the patient at a speed that they can handle and adjust the taper rate based on their symptoms.
Kevin Pho: Now, what would be some use cases for benzodiazepines where the medical literature would support their use in 2021?
Christy Huff: So I think they’re useful in very short-term treatment of anxiety and panic disorder, and treatment of acute alcohol withdrawal. Sometimes they’re used for short-term treatment of muscle spasms. I mean, I think the key is that they should always be used short-term, or very intermittently, just to mitigate the risk of developing physical dependence.
Kevin Pho: So in the medical literature and in lay media, there’s a lot of talk about the opioid crisis, and right now, physicians are being more judicious in prescribing opioids. Are you seeing the same thing and the same trends as it relates to benzodiazepine prescribing?
Christy Huff: Yes, I definitely am. And I don’t think that’s so much a problem on the front end, as far as prescribing to new patients, but the problem that we run into and see most often is that patients are being cut off their medication too quickly, because physicians are being reactive and they’re sort of panicking, and they’re saying, “I need to get the patient off now.” But unfortunately, that leads to a lot of, you know, long-term damage for patients when they’re being cut off too quickly.
Kevin Pho: We’re talking to Christy Huff. She is a cardiologist, and she wrote the KevinMD article “The updated benzodiazepine boxed warning: What you need to know.” Christy, you mentioned there was a lack of physician education when it comes to benzodiazepines and benzodiazepine prescribing. What would you say are the top one or two issues that physicians need to know about?
Christy Huff: Yeah, so I think the biggest issue I would want them to know about is the gradual taper, and basing it on the patient’s symptomatology, and just not being reactive, like I said earlier, and feeling that you need to get the patient off the medication too quickly. It’s really a marathon and not a sprint.
And the other thing that I would really hope physicians do is put, you know, adverse effects and physical dependence and withdrawal symptoms on your differential diagnosis. So you really need to have that in your mind, because, you know, I asked my physicians repeatedly, “Could it be the Xanax? Could it be the Xanax?” And everyone just always said no. So that really just needs to be, I think, top on your list.
Kevin Pho: And my final question: What’s your take-home message that you want to leave with the KevinMD audience?
Christy Huff: I want you to know that benzodiazepines have some serious risks and harms, and I think patients really need to be receiving informed consent about these medications before they start. We’ve even thought about the possibility of written informed consent, and I actually authored a written informed consent form that’s available on our website.
Another thing that I’d like you to do is check out the hashtag #WorldBenzoDay, because World Benzodiazepine Awareness Day is on July 11, and patients share their stories of benzodiazepine harm. I really think these stories speak for themselves, and it’s really the reason why I am participating in advocacy. So I hope you’ll check those out.
Kevin Pho: And how can people reach you?
Christy Huff: I can be reached on Twitter at @christyhuffMD, and our website is benzoinfo.com.
Kevin Pho: Christy, thank you so much for sharing your time and insight, and thanks again for being on the show.
Christy Huff: Thanks, Kevin.
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