Episode Transcript
Michelle Briest / Compounding Pharmacist
Jill Brook: [00:00:00] Hello, fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today we have an episode of POTS Matters with Dr. Michelle Briest, who is a doctor of pharmacy and a compounding pharmacist. I will let her explain what that is in a moment.
She works at Belmar Compounding Pharmacy in Colorado, which I learned of because of my work with the LDN Research Trust. They are very helpful to people looking for low dose naltrexone. So Dr. Briest has been educating her peers about patients like us with POTS and mast cell activation syndrome, who have lots of sensitivities to medications. And today she's going to share an insider's view of medications, ingredients, what we can do when we have sensitivities to medications, and how pharmacists can be important members of our health teams. Dr. Briest, thank you so much for speaking with us today.
Michelle Briest: It's a pleasure, Jill. Thanks for having me.[00:01:00]
Jill Brook: So can you start by telling us about your pharmacy training and background?
Michelle Briest: I graduated from North Dakota State University almost 25 years ago with my Pharm D degree and have spent nearly 15 years of my career in compounding specialty. I started out in retail pharmacy, so I have a great understanding of that area of pharmacy as well, which I think helps to serve the MCAS and POTS population as well.
Jill Brook: What made you decide to become a pharmacist?
Michelle Briest: Ultimately, it was helping people. I really thrive on making a difference in the daily lives of patients. I had originally had plans of becoming a nurse for that exact same reason, and ultimately gravitated to pharmacy.
Jill Brook: Yeah, and we'll talk about this in a minute, but you are so helpful to me the other day when I was having a little drug [00:02:00] reaction, excipient problem. And I never realized how important a pharmacist could be on one's health team until that moment. But before we get there, what is a compounding pharmacy?
Michelle Briest: So we are a pharmacy that custom makes the patient's medications specific to their needs and with their provider's prescription.
Jill Brook: So how is that different from a normal, regular pharmacy?
Michelle Briest: So regular pharmacies or retail pharmacies only have the ability to dispense for their patients what is commercially available from the manufacturers, and they aren't able to adjust the excipient or the filler, or dose for a specific patient. We make our products directly on site in our lab.
Jill Brook: So which medications do you typically see compounded the most and for what reasons?
Michelle Briest: Low dose naltrexone [00:03:00] and bio identical hormones are our most common compounds here at Belmar. They're compounded because they are not available commercially in the doses or formulations that we're able to provide.
Jill Brook: Okay, so it sounds like a retail pharmacy basically gets a shipment of drugs from like a pharma company, whereas you actually have people like mixing ingredients and making the actual drugs right there. Is that correct?
Michelle Briest: Correct. We have technicians that make the products directly on site.
Jill Brook: So POTS and mast cell patients are famous for having sensitivities to all sorts of things, including medications and ingredients in medications. Do you have any insights about why some people are so much more sensitive than others when it comes to things like that?
Michelle Briest: Sure. There is actually some ongoing [00:04:00] research and studies being conducted on this. There was a study in Germany that suggested that 17% of the population may have the genetics to develop MCAS, and there's actually some evidence to support that that percentage could be as high as 20%. We need to remember that this is a relatively new condition that has just been recognized within the last 15 years.
And the understanding of MCAS is still evolving. I also think that that's perpetuated by the fact that many patients do not have just one problem or condition. They often are dealing with and have multiple conditions.
Jill Brook: Amen. Amen for you being aware of that. That's so helpful. What kinds of things can a compounding pharmacy or compounding pharmacist do to help patients with [00:05:00] sensitivities or a history of bad drug reactions?
Michelle Briest: We can customize medications to avoid an excipient that has been found to be problematic for the patient.
Jill Brook: So for example, like if somebody has an issue with anything made from corn, you could make them a version that doesn't have that. Is that kind of what you're saying?
Michelle Briest: Correct. Lactose is a common excipient founded commercial products that we are able to avoid.
Jill Brook: Is gluten ever put into drugs or do they pretty much stay away from that one knowing that so many people have issues?
Michelle Briest: That is not something we have in our products here. I know there are some instances with some commercial products where that has the potential to be problematic.
Jill Brook: Interesting. So one compounded drug that is getting increased attention for mast cell activation syndrome and POTS is low dose naltrexone. And I know you guys at [00:06:00] Belmar Pharmacy do a lot of that. Can you talk about that drug.
Michelle Briest: Absolutely. We do find that low dose naltrexone can be helpful for some MCAS and POTS patients. This is very much patient-specific as far as the effectiveness. However, there can be a benefit. First we need to get the histamine release under control. Avoidance of triggers is going to be key.
And then adding in LDN can help modulate the immune system to function more appropriately.
Jill Brook: So it's interesting that you mentioned those histamines because I found you while I was thinking that I was having MCAS reactions to my antihistamines because of all the normal excipients and things, and you were super helpful. But my first question is, why on earth do commercial formulations of allergy medicines contain ingredients known to cause allergies?
Michelle Briest: [00:07:00] Yeah, that's a great question, Jill. Kind of a million dollar question. Unfortunately, some of the offenders are necessary for certain of the processes of manufacturing such as the coatings or ensuring that the powders used in the process don't cake or stick together. And in instances of certain products added preservatives, the colorings primarily use for identification purposes.
Jill Brook: Okay. And I get it that when they're mass producing things, they need to make things cheap and easy and they're not thinking about us few people with sensitivities. But for those of us with the sensitivities, what can your pharmacy offer instead?
Michelle Briest: We can offer custom made medications specific to a patient's needs. Really whether that is the need for a medication that is not available commercially [00:08:00] or without a problematic excipient or excipients. Some of those common examples are ketotifin, low dose naltrexone, and chromolyn sodium just to name a few.
Jill Brook: Yeah, and just in case anybody's listening and doesn't know what the word excipients means, that just means ingredients they use in a formulation for a pill or a drug right?
Michelle Briest: Correct. Or a filler, a dye, a coating. It's whatever it takes to put into that particular product to make it what it needs to be.
Jill Brook: Okay. So for example, if somebody wanted a compounded version of the allergy medicine Claritin, I think that's what I was looking for when I called you, how can they get that? Do they need a prescription?
Michelle Briest: Yes, we can compound different antihistamines as long as the active ingredient powder is available. And yes, the prescription is required [00:09:00] for all compounded products.
Jill Brook: What are the most common drug excipients that people seem to react to?
Michelle Briest: In my experience, the most common problem I see is in dyes, in commercial products. But there are numerous potential problems. This is something that really is very patient specific.
Jill Brook: If a patient reacts poorly to a medication, is there any way to figure out whether the problem was like the active drug versus some inactive ingredient or excipient?
Michelle Briest: There actually is. I've recommended this in a few instances that a patient's provider order just a capsule with the filler or excipient for example a gelatin or a cellulose capsule with only the filler, whether that's micro crystal and cellulose that we choose, or rice flour. And go from there to [00:10:00] help make a determination of what the underlying problem may be.
Jill Brook: Oh man, that is so smart because all the time you talk to patients who give up on a drug because they had a bad experience, but it's possible that it was just that they needed the rice flour instead of the corn flour or something like that as a filler.
Michelle Briest: Similar. Or we have a product that has a dye in it and we don't know if it's the dye, we don't know if it's x, y, z filler. And we kind of pull it apart because we're not gonna have a dye in our product. So, we're able to take that one potential problem away immediately and then really go from there.
Jill Brook: In my case, I was having a weird reaction to some of the over the counter antihistamines where they would all make me super, super hyper and unable to sleep. And so I was in this point where I had to choose between taking an [00:11:00] antihistamine and having my reaction get better, but then the price I would pay is not sleep for a night or two.
And as soon as I had you guys make me a compounded version, then that went away and it worked the way it's supposed to work, which is to stop the reaction and let me sleep, and I never knew what excipient was the problem, but I didn't care. All I knew is that when I get this cleaner version, it works.
Michelle Briest: Yeah and sometimes we don't always necessarily know exactly what it is. But we are able to help in so many of those cases.
Jill Brook: Yeah, that's huge when you get a drug back working for you again that you thought you didn't have the option to use. So does insurance typically cover compounded medications?
Michelle Briest: This would depend on the patient's prescription plan. We do not have third party contracts at Belmar Pharmacy, so this is not something I have a lot of knowledge on.[00:12:00] We are strictly out of pocket that patients can resubmit on their own for a possible reimbursement. I always say to check with your insurance to confirm whether or not they cover compounded medications.
We found that the majority do not. So I really put that on the patient to be their advocate and find out what their plan entails.
Jill Brook: Do you think that most doctors know about compounding medications? Cause I've never had a doctor mention it to me except for MCAS specialists. Like even when I was having issues with drugs, nobody ever brought it up as an option.
Michelle Briest: I do think a lot of doctors know about compounding, but they don't necessarily know about everything that can be done in the compounding realm. Unless they're an integrative or functional medicine specialist.
Jill Brook: Okay, so I believe that you have taken a leadership role at your pharmacy to teach your [00:13:00] colleagues about mast cell activation syndrome and people with hypersensitivities, and I'm so grateful. Cuz when I was talking to you trying to find something that would help, I believe that the pharmacist I was speaking to actually brought up mast cell activation syndrome and I was blown away.
I was like, Oh, you guys know about that? So my question is how did you learn about mast cell activation syndrome and ,what do your colleagues think when you teach them about.
Michelle Briest: Well, it's funny you should bring that up because it hasn't always been that way. I was actually first introduced to a mast cell activation at the American Academy Environmental Medicine Conference here in Colorado back in 2018. We were just beginning to get more calls from patients regarding this, and I had a complete frustration that nobody knew what they were talking about and the patients were frustrated as well that as pharmacists, we [00:14:00] didn't know what they were talking about. So I really took it upon myself to dive in and learn more about mast cell activation and how we as a compounding pharmacy and compounding pharmacists could help these patients.
My colleagues are continually, amazed about the complexity but they also now are very well equipped with the tools to help the patients as well. And we have continual training here at Belmar to keep all of our pharmacists up to date of the newest trends and conditions that are being talked about and what's going on with those.
Jill Brook: Man. Well, we are so grateful as the people who are used to getting told, just deal with it. You're just anxious. You're just being hypervigilant. Just get over it. Having pharmacists who understand and believe us is really huge. So thank you for all that you're doing. Many of [00:15:00] us get scared to try new medications if we have had some bad experiences in the past. Do you have any advice for us?
Michelle Briest: The best advice that I can give to you and to the community is really to do your own homework. be your own advocate in identifying and recognizing what may be a potential problem or trigger. For mast cell patients, it's often excipients in medications and not necessarily the medication itself, or there's some other trigger. So that's really the best advice I always give my patients.
Jill Brook: Yeah, and I also appreciate that you guys make it possible to start with much lower doses than normal. Like with low dose naltrexone, I know that kind of an average is maybe around 4.5 milligrams per day, but I know a lot of mast cell patients who start at just one milligram or even half a milligram, and you [00:16:00] guys make it possible for people to just like really just dip a toe and go very, very slow in case they're sensitive.
Michelle Briest: Yes, that's absolutely the key for many patients.
Jill Brook: So, do you have any other advice for patients with MCAS or sensitivities or just advice for patients in general?
Michelle Briest: Being your own advocate, educating yourself and keeping a log and journal is gonna be a real big key. And I honestly find that patients are very good at keeping track of excipients, possible triggers, whatever it is that they may or may not have been exposed to or are trying to avoid.
And in the medication world there's a great resource called Daily Med, and it is a great tool that I continually recommend to patients to help on their journey so that we're able to help them [00:17:00] identify when it comes to commercial products, what it is that they may be exposed to. So really great tool.
Jill Brook: And we'll link to that tool so that people can find it. And I think that's the tool where you can put in the drug that you're taking ,the formulation and then it has all the information about that drug. I think if you scroll to the very bottom, it gives you the list of inactive ingredients so that you can see every excipient that's in there and you can start trying to figure out what might be a problem for you or see if a drug is gonna have more or less of the stuff that works for you. So that is a great tip. Dr. Briest, thank you so much for all of this great information. We are so grateful for your taking the time to share it with us today and for your ongoing work to educate your peers about patients like us.
I know that you are saving us lots of heartache and time and trouble and maybe reactions with all this work you're doing. So [00:18:00] thank you big time.
Michelle Briest: No. Absolutely. It's been a pleasure, Jill, and we look forward to helping the patients as we move forward.
Jill Brook: Okay, listeners, isn't it great to know that there's somebody out there who understands us? We hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.
