Welcome to the Mad in America podcast. My name is Brooke Siem, and I am the author of the award-winning memoir on antidepressant withdrawal, May Cause Side Effects. Today, I am here with Alicia Martin, and I’m really excited because she has created something very cool down in Australia, and I can’t wait to hear more about it.
Alicia is an Australian community pharmacist, a member of the Not Broken Project and founder of TaperMate. Through her work in pharmacy, Alicia saw patients struggling with unusual and severe symptoms when they tried to stop their antidepressants and realized there was little support when people wanted to stop long-term medications.
Rather than waiting for the system to catch up, she started building a solution. TaperMate now supports people across the world to track and adjust hyperbolic tapering plans through a simple mobile app and provides personalized tapering plans and advice for patients across Australia through a pharmacist-led telehealth tapering clinic.
The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
Brooke Siem: Alicia, welcome to the Mad in America podcast.
Alicia Martin: Thank you for having me.
Siem: One of the reasons why I am thrilled to have you here is because I’ve long said that pharmacists are an underutilized resource in the world of tapering. You guys deal with this stuff every day, you know a lot, and I remember wondering why my pharmacist never said anything when I was on six different drugs. I also remember being so grateful for my pharmacist when I ran out of Effexor one day. It was a Saturday when I walked in, I was a hot mess, and I said “Just give me three, I’ve got to get through to Monday.” Which they did; somehow they got it.
So, how did you get interested in antidepressant withdrawal to begin with?
Martin: It’s so interesting that you mention going in on the weekend when you’d run out of medication because that’s the first thing that I noticed, and specifically with Effexor. I had someone exactly like you come in, they were desperate and described what they were feeling, and I thought, oh my gosh, this is worse than I expected.
You learn that antidepressants can cause withdrawal symptoms, but it gets described as mild and short-lived. So, you’d see these people on the weekends and witness the desperation that they have because the symptoms are really uncomfortable. Then I had this one patient who had asked to come off a medication after long-term use. He says, “I’m no doctor, but I studied some chemistry at university, and I just want to know what you think about what my doctor has told me to do because I reckon pharmacists have a better idea about it than they do.”
He said the doctor told him to take it every second day, then every third day, then every fourth day. I didn’t think that made any sense. It was something like Effexor with a short half-life so that he would just go into withdrawal, out of withdrawal, into withdrawal. I was really glad that he came in to ask, but there’s this hierarchy in medicine. I was an intern pharmacist; I was still very fresh, and there’s this hierarchy. So I didn’t want to just call the doctor and say that doesn’t make any sense. I wanted to have something to back me up. So I started doing a bit of research to try to find guidelines.
There were these guidelines in Australia which covered switching antidepressants, and they would say, “Taper the dose over two to four weeks, then have a washout period and then start.” I called the doctor, and they said, “Oh, no, don’t worry about that. It’s totally fine. I’ve done this before.” And I said, “Oh, I’m really not sure.”
Then I was doing more research, I came across Surviving Antidepressants and Mark Horowitz on Twitter, and then I found all these Facebook groups. And I thought, there are hundreds of thousands of people having these same issues and not getting good advice. So I went down the rabbit hole, and I wanted to learn as much as I could. I joined all the groups, and that’s how I got into this area.
I do feel grateful that I don’t actually have personal experience with the problem because I’ve seen so many horror stories, and so I just want to help people and try to prevent them from having the same experiences as you did. I listened to your audiobook, and it was just so common to see people on all these medications. As you said, sometimes as a pharmacist, you look at it, and you think, this looks like a crazy cocktail of things. I can’t understand why they’re on it.
But it’s actually hard to have that conversation with patient sometimes because you sort of say, “Oh, did you know this is a weird combination?” They can get quite defensive and respond, “Well, my doctor told me that this is what it should be.” And you say, “Okay, just thought I’d flag it.” So I think it’s important that we do get a little bit more confident in putting the seed of a question into a patient’s mind: is it the right choice for me to be on five different medicines if I’m still not actually feeling very well?
Siem: One thing I’ve sort of been unclear about is that I’ve had a lot of pharmacists reach out to me privately. Why is it that pharmacists seem to have more of a clue of what’s going on here than doctors? Why are you guys getting different information?
Martin: It’s a great question. I suspect there is an element of us having closer and more frequent contact with patients, like seeing them on the weekend when they’re inadvertently in withdrawal. So there’s a bit of that accessibility in terms of the patient actually being more open with you about what’s happening. But I also think because our training is so focused on the pharmacology of drugs and how they work on the body and the receptors, I think we have a better understanding of what withdrawal can be, why it exists and why rapid tapering doesn’t necessarily make sense. I think it’s a combination of very drug specific training rather than matching medication to diagnosis.
It’s sort of the inverse: the doctors get a lot of diagnosis and treatment matching, and we get a lot of drugs and therapeutics. So I think from the withdrawal perspective, we just have a bit of a better idea about how the drugs specifically are working at a receptor level in the body.
Siem: I’m asking a broad question to a single person in one country, I’m aware. But in your estimation, what is happening to people when they go into withdrawal? Because from my research and understanding of this, the best I can say is nobody has a clue, really.
Martin: I think we now have some better estimations based on studies and things like hyperbolic tapering. The thing I really like about hyperbolic tapering as a concept is that the people in online forums figured it out themselves: reducing by a percentage of the current dose every four weeks or whatever. Smaller and smaller amounts were the only thing that they were able to comfortably do compared to what they’d been recommended by doctors. Then people like Mark Horowitz and other researchers asked, Well, why is this?
Then they look at the brain imaging scans and see that the receptor occupancy isn’t in a straight line; it’s got this kind of hyperbolic pattern. So as much as we still don’t know 100% exactly how or why it’s like that, we saw something real happening and then we did some investigation and saw, okay, there’s an unexpected pattern in the brain receptor occupancy at different doses.
So if we reduce by smaller amounts, that seems to be more tolerable. But I think the bit we don’t know, because there haven’t really been any studies in long term use, is why some people experience severe withdrawal symptoms and other people don’t, even if they have similar histories. But clearly, the body is always trying to be at that homeostasis balance point. So when you introduce something that changes the level of neurotransmitters in your brain in the short term, that makes a change. But in the long term, your body’s just going to adapt to overcome that change.
We see this in all sorts of other body systems with hormones, where if you take something to fix it, it works for a bit. Then the body adjusts to counteract it. So that’s why I’ve never understood the concept of long-term use of antidepressants, because obviously the body is just going to keep adapting and adapting. We know that depression isn’t caused by a chemical imbalance, so you don’t need to take them forever.
I feel very passionate that medications help some people. But it makes the most sense to use them in short cycles, work on other coping mechanisms and understand what’s actually happening to the person. In your case, grief, like death in the family, is a perfectly normal reason to be upset, and maybe having something short-term to help in that period is helpful, but taking it forever just doesn’t make sense pharmacologically or from a human perspective.
Siem: When you have patients who are on multiple drugs, how do you approach the taper process?
Martin: It’s a really tricky question because, again, there aren’t really guidelines of which you pick first. So it’s kind of like trial and error. I always just ask people, which one do you want to start with? Is there a particular one that you think is causing a side effect or a problem that you’re more keen to stop? Then is there one that you actually feel is helpful? So sometimes people are taking one that causes drowsiness, and they feel it helps them with their sleep, and they’re worried about their sleep. So they say, ”Well, let’s tackle that one last.” Then we start with this other one that’s causing brain fog or weight gain or something. So it’s personalized in terms of patient preference. I also usually try to find the one that I think might be causing the most side effects or the highest risk of long-term issues.
Sometimes it’s good to start with low-hanging fruit. So maybe the most recent one that’s been added, so it’s hopefully the easiest to stop, and that can help build confidence in the process rather than tackling the one that they’ve been on the longest. It’s kind of getting them into the zone, this is what tapering looks like and how it works, and then they’re ready to tackle the harder ones. But there’s really no right way to do it, I guess, at this stage.
Siem: I think about this a lot because it’s rare that people come to me only on one drug. I’m not a pharmacist, and I’m not a doctor, so I come at this stuff from a different perspective. One of the things I’ve wondered about is if we’ve been on these drugs for a long period of time and we’re on a cocktail, let’s say. People will step down off of one drug. And then if there’s a reaction, I’ve often wondered how much of it is reducing the drug itself? What about the fact that if you’ve been on a cocktail for a long time and your body has adjusted to it, and then you change one, we’ve now thrown the whole ratio off?
So in my head, I’ve wondered why we have not considered dropping the whole cocktail at once, but keeping the ratios the same. You are the first pharmacist I’ve had a chance to ask about this.
Martin: That’s a really cool question, and I like it. It’s come up a couple of times recently with some patients that I’ve seen that are on multiple things long-term. I guess my previous wisdom was, let’s do one at a time so that if you do experience issues, we know which one is causing the problems, and we can adjust. But my second thought is that I had the question of, well, I think this one got added because of a side effect from this other drug. So if I start reducing this one, what will happen with this other one?
So I actually thought about what if we start with one, do a little bit, then the other one, we do a little bit, we sort of do this stepwise approach. So similarly, you’re kind of reducing everything at once, but maybe not everything all at once straight away. We are starting with one, doing a little bit of a step, doing the other a little bit of a step so that everything’s coming down, which might help. That sort of issue where it’s all happening in the one system may be because most of them will be working on similar neurotransmitters or pathways.
I think it’s really interesting to consider and to keep in mind that if you’re someone that’s on lots of medications or if you’re someone that’s helping people come off is how does reducing one potentially affect the levels of another? With drug interactions, it could be that there are two drugs, and one of them is blocking one of the enzymes that breaks down the other one. So the person’s ended up having to have a higher dose of both because of the interaction. I think it’s really important to have a pharmacist actually look at your drug interactions before you start trying to remove anything.
It can be a bit disheartening sometimes when you’re talking to someone, and you say, “We should do one at a time so we know what’s going on. But also each one is going to take maybe two years or something to come off if we follow the slowest plan.” They think, how long am I going to be tapering for?
So I can see the appeal from the patient’s perspective where they might think, I don’t really care which one it is that’s causing the problems. When we get to that point, we can adjust and go from there. But at least at the start, the reductions from higher doses are easier anyway. So it sort of makes sense to start a little bit faster and then just as long as you’re following that hyperbolic principle and pausing when things do get tricky.
Siem: I’ve heard so many interesting things where people are saying we’re taking our drugs every 18 hours instead of every 24, or this particular drug we need to take every two days while we taper this one. People get very creative once they really start getting in tune with their body and what feels right, and that in itself is its own art that is coming on the heels of hyperbolic tapering, which is already a new idea.
Martin: It’s fascinating, and sometimes I get a question that kind of throws me because I’m not expecting it and you sort of think, Oh, gosh, this isn’t really a question that I’ve ever had to answer as a pharmacist. So you logic your way through it and think about half-lives and that kind of stuff. But they are questions that you don’t really have an answer to, and you just have to figure out the most reasonable approach. But I think that whole thing of listening to your body and going at that pace that feels right is very important.
Sometimes the hyperbolic approach works great, and there are no issues, and that’s awesome, and then for other people, it doesn’t quite work. I’ve had a few conversations recently about the difference between a daily micro taper or a cut and hold, and you sort of make an assumption that, in theory, a daily micro taper should be more tolerable because it’s much smaller reductions.
But you are having a reduction every day, and then you think, at what point do you have to have a pause so it doesn’t all catch up. Then some people might actually find that the cut and hold works better. So it’s really personalized and I think it’s really an art form rather than a science.
Siem: I have another question about formulations before we get into TaperMate. One thing that people have learned the hard way about liquid tapering, and I’m curious if this is the case in Australia as well, is that different compounding pharmacies will use different mediums to mix the drugs. If you end up switching pharmacies, you can end up with different formulations, and they don’t stay as stable.
I’m curious as to how patients can be informed going into a liquid taper and what questions should they be asking their pharmacist to make sure that the formulation itself is remaining steady across different bottles?
Martin: That’s a really good question because even just generally switching from tablets or capsules to a liquid, there seems to be this small subset of people that even just can’t tolerate that general switch. I always recommend doing that switch gradually and treating swapping from a solid dosage form to a liquid as like a step in the taper. I always use the analogy of changing your cat’s food, you sort of do 50% of the new one and 50% of the old one. So you have half the dose in tablet form and half the dose in liquid form to like do a gradual transition, because the theory is that liquids are absorbed faster in the gut and so that just has a different impact in your body, and so it can feel different. It’s uncomfortable for some people; other people have no issue at all.
Similarly, switching from different compounded products using a different base can also be destabilizing, and so my best advice would be to try to stick to the same pharmacy and same formulation wherever possible. But I think it would be important because pharmacists probably don’t fully understand how much even a small difference can impact a person when they’re tapering, especially at the lower doses where liquids are really needed.
One of the questions you can ask your pharmacy is what their acceptable error rate is when they’re weighing the ingredients. I did a compounding training earlier this year because I can see that it’s something that is very relevant to tapering, and I wanted to be able to give people better advice about this stuff. In Australia, the acceptable standard is a 10% margin of error. For commercially available products, it’s the same standard.
Siem: So high for tapering.
Martin: When you hear 10% you think, oh my gosh that’s 10% of the ingredient which then gets spread across all the dose. It doesn’t end up being a full 10% difference in your dose, but it can still be enough to have an impact. So ask the pharmacy what your margin of error is, show them that you are concerned about the accuracy so that they know that and can make sure that they’re maybe extra cautious when they’re making yours.
I think just flagging that you’re conscious of the accuracy, asking a couple of questions and if they seem like put off or weird about it then I’d maybe go and find another pharmacy that’s more interested in really caring. I suspect that most pharmacies would pride themselves on trying to make accurate compounds and so they shouldn’t be offended by that question.
Siem: Tell me about TaperMate. How did you decide to create it, and what went into making this application for people?
Martin: So I joined all these online forums; I was in all these Facebook groups for antidepressants and benzos and anything else I could find. I was just trying to learn from people. Then, at the time, I was using a period tracking app to track symptoms for something going on with myself. And I thought, it would be cool if there was something like this for tapering because people are always talking about symptoms and patterns and trying to figure out when can they safely reduce their dose again.
So I thought, it’d be cool if something like that existed, but I didn’t necessarily think I would be the one to do it. So this idea was sort of floating in my head and then time went on and I thought, well how does one make a mobile app? How do we make this thing happen? So I started doing a bit of research, contacted a few app development companies, and discovered that it’s crazy expensive to get someone to build an app for you.
So I did this program through my hometown, which was called Idea to Impact, and it was this six-week workshop course of how you bring an idea to life and through them they do this monthly networking event and you can pitch your idea. So I pitched it. I said I’ve got this idea, but I don’t know how to make an app. Does anyone want to help me?
I actually posted it on Instagram and I found a guy I went to high school with, he was in the year above me at school and he messaged me and said he studied software development but didn’t really get to use it very much in his day job and he’d love to practice it some more. He said, “I’d really love to help you build this thing on the weekends for free because I want to practice my skills”. So the two of us worked together to start building what it would look like, and then we got a grant from the local government as well. So we were able to get two more developers in to build that first version.
It’s been downloaded in 83 different countries around the world, and it’s just been so rewarding seeing people use it. We were getting feedback and people saying “I wish it did this, I wish it did that” and I’m like “Oh, that’s such a great idea” and it’s all this stuff that you can’t really figure out until people are using it in their real-world use cases.
Siem: Amazing. Okay, I’m curious what sort of reaction have you received from your colleagues since beginning TaperMate.
Martin: My pharmacist colleagues have been crazy excited about it. They’re really supportive and think it’s a cool idea. I think a lot of them are still wrapping their head fully around how complicated and long a hyperbolic taper can be and, and the same with some GPs, so I also started a telehealth service.
So the TaperMate app is helpful for people who already know about the problem and the idea of a hyperbolic taper. The app will calculate it out, and they can symptom-track and adjust the plan and all that, but a lot of people don’t already know about hyperbolic tapering or have a plan. So I started a telehealth service to talk to people about their medication histories and actually help them make a plan and coordinate with their doctor. I had one GP call me to clarify the plan and he was so nice and he said I think this is so cool what you’re doing and his wife is a pharmacist and so he was more open to it and aware of it.
I was at a pharmacy conference over the weekend here in Australia, and I did a little presentation about TaperMate. I submitted an abstract for what’s called a practice pearl which is if you haven’t done a specific research project but you’ve done something cool in practice that you want to share. I had I think six or seven different pharmacists come up to me throughout the conference and say they’ve actually recommended TaperMate to a patient of theirs.
So it’s been a really positive reaction so far from my colleagues. I think pharmacists are very open to the concept of doing something differently and trying to help their patients. I was expecting more pushback maybe, but I’ve really mostly had very positive reactions, which has been really nice.
Siem: Have you had anybody successfully complete a taper with you guys yet from start to finish?
Martin: We only really started last year, and so most of the people who have found us so far have very complex, high-risk withdrawal histories. So I don’t have a huge pile of people that I can go look at for success stories. But especially with the telehealth, I have a couple of people who are getting very close to the end of their taper. In the app we’ve certainly had people who have successfully tapered because when they cancel their subscription, you ask “why did you cancel,” and one of the reasons is “completed my taper” and so whenever I see that I think that’s amazing.
So a few people, but, as we know, it can be a long and difficult process, so as the years go on we’ll have more and more success stories.
Siem: What are your hopes for this project at this point? It’s your side job in a way, but I don’t think it’s going to be that way for very long.
Martin: The goal is that it will become my full-time job. I think there’s certainly enough people struggling with this problem to facilitate that, and so I am actually in the process of reducing my hours in my job in the pharmacy so that I can do more time on TaperMate.
I’ve got some very big ideas about how we can incorporate compounding and I’m working on some referral pathways with prescribers so that people can get the tapering plan and get a script for compounding or whatever it is they need to follow that tapering plan quickly.
At the moment I’m coordinating with their personal doctors which sometimes, you send a letter they can’t get an appointment for two weeks then they have to take the script to a compounding pharmacy it can take a few days or a week and so from the time I see them to the time they actually can start the taper it might have been a month. So I am working on some referral pathways with mental health nurse practitioners who can get their process going more quickly. We’ll still communicate with their existing healthcare teams, but that won’t be the rate-limiting step in actually getting the process started.
So I’ve got big visions of being the one-stop shop for tapering support. In Australia to start with, but there’s no reason we couldn’t expand that around the world as well.
Siem: I think that’s part of what’s great about it is that medicine is very country-based as far as where you’re getting your care from, and yet so much of tapering just happens in your kitchen by yourself.
Martin: Yes, and that’s one of the main things. TaperMate has five different tapering methods so if you’re weighing your dose on a scale at home or counting beads or making a liquid or using a compounding pharmacy or cutting tablets, whichever method it is you’ve decided is the one that that makes the most sense for you. Then TaperMate will calculate the steps and how to actually achieve the dose using the method you’ve picked. So we’re really trying to lean into that idea that every person is going to have a different method that works for them and is easier for them.
But then how do they actually do the maths of it and that’s where pharmacists are trained in dose calculations, that’s our bread and butter so it just made sense to make something to help people with that that side of the process.
Siem: If you could speak to a large group of pharmacists about this topic, what would you tell them?
Martin: I would tell them that even though they might not feel like it’s within their role or their scope of practice to talk to people about stopping medications, it definitely is. I’ve seen a lot of pharmacists where a person says they don’t want to be on this medication anymore, not just antidepressants but any type of medication, and sometimes they say well I’m not allowed to make any recommendations about you changing your medicines you have to talk to your doctor. I would push back on that and say the person has the right to choose what they do or don’t take, and you have all this knowledge about medicines and how someone could safely stop a medication.
And so as much as certainly their doctor should be involved in the decision-making process potentially, I don’t think it’s a good thing to just step out and say that it’s not part of your role. We actually know about whether you can actually halve this tablet or is it modified release and you’re not supposed to do that, whereas the doctors don’t necessarily have that.
So we really should be involved in discussions about deprescribing, particularly with psychotropic medications. I can understand there’s more caution because we don’t want to throw people into relapse or we don’t fully understand withdrawal, and so I think it’s important to say this is the information that I know and that I can give you. Let me talk to your doctor as well, or let’s make it a group decision, but I think pharmacists should be more involved in deprescribing than maybe we are at the moment.
Siem: I agree, and I think that for patients, even just realizing that their pharmacist is a huge resource is something a lot of people don’t know.
Martin: Even when I was studying to be a pharmacist, I didn’t really know that, especially in community or retail pharmacy, you can just go in and ask the pharmacist for advice about stuff. I’m sure that there’s so many people that don’t realize but you can just go into a pharmacy and ask the pharmacist a question. If they have the answer they can help you and if they don’t, they can point you in the right direction. We’re very accessible and happy to answer your questions.
Siem: Well, Alicia, thank you so much for joining us today. Are there any final thoughts you would like to leave with the audience? And where can people find you on the internet?
Martin: My final thought is if you’re thinking about coming off different medications, ask your pharmacist about potential drug interactions which might affect you. If you drop one, what happens with the other one? It is really a big process, and your pharmacist probably has more ability to help you than maybe you previously thought.
I am on social media. I’m trying to share videos and content about tapering tips and tricks for doing it yourself, general information. So if you want to learn more, I’m on Instagram at TaperMateApp. I’m on TikTok at pharmalicia.tapermate. We’re on Facebook and at our website tapermate.com.au.
You can find information about the app and the telehealth service, and we also recently created a dose calculator website that just does single-dose calculations, it’s calculator.tapermate.com.au. If you just want to do some quick, single-dose calculation stuff, it’s there. It’s got all the tapering methods, and I think it’s really handy and will be really helpful for doctors and prescribers trying to help people through tapering. I had someone message me recently, she works in a benzo deprescribing area, and said I’ve used your calculator website so much recently it’s really helpful.
So that’s what I’d like to wrap up with is to find the tool that helps you and there’s lots of cool information out there that we’re trying to put together for people.
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