← Living Well with Multiple Sclerosis
Living Well with Multiple Sclerosis
Webinar highlights: Ask Aaron – Your opportunity to speak to a Neurologist about living well with MS | S7E17
00:46:55
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- [00:00]
A
Number one is to not smoke stuff. Smoking speeds up Ms. By 50%. It doubles the risk to develop Ms. And stopping smoking slows it down. Now, behind that is a really big conversation about other cardiovascular risk factors and brain health. Number two is to exercise as part of your lifestyle, which means it is woven into the fabric of your week. You're not punished when you don't do it and you're not rewarded when you do it. It's just something that you do and it needs to be integrated into just part of your daily activities, like brushing your teeth and wearing clothes. If you wear clothes.
- [00:32]
B
Welcome to Living well with Ms. This show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about Living well with Ms. By signing up for our newsletter@overcomingms.org newsletter and now let's meet our guest. We are so pleased to bring you tonight's session with Dr. Aaron Boster, who is an award winning neurologist from the Boster center for Ms. In my own home state of Ohio. My name is Gina Beach. I am an OMSer. I live with relapsing remitting Ms. And I'm joining you today from South Wales. Hello. Hello Dr. Boster. How are you?
- [01:37]
A
I am super excited to be here. I'm doing great. How are you?
- [01:40]
B
We're really excited to have you. Thanks so much for joining us again. We have some really great questions and we're really excited to have your knowledge and expertise with us today.
- [01:50]
A
Let's do it up.
- [01:52]
B
Our first question asks what does the support of a patient look like to you if they're not undertaking any disease modifying treatments but they are opting to follow the other parts of the Overcoming Ms. Program.
- [02:07]
A
So that's a great question and I like the way that it's phrased. My goal at the Boster center for Ms. Is to try to help families impacted by the disease live their best life despite having the condition. So I want to bring everything I know about to bear. I want to bring all the tools that I have to try to help that person accomplish that goal and it's a multi pronged approach. So I want to bring to the table nutritional information that will help them live a healthier life. I want to bring to the table information surrounding exercise to help them live a healthy life. I want to bring information about Brain health to the table to help them live a healthy life. And I want to bring pharmacology to the table to help them live a healthy life. Now just because I want to bring all of those things doesn't mean they want to do them. It just means that's what I'm proposing. And I have patients who agree to take a disease modifying therapy and they will not stop smoking. Now I don't discharge that patient from my clinic and say, you're a very naughty boy and you're not allowed to be seen. On the contrary, I treat them and we continue to engage on my concerns about their smoking and they keep telling me they smoke great, doc. In a similar fashion, if someone that I'm taking care of would like to embrace other aspects of Ms. Care but is not inclined to take a disease modifying therapy, I'm not going to discharge them from my practice. I'm going to help them in the other areas and I reserve the right to share my concerns. Right. I'm allowed to say, golly gee, there's excellent evidence that disease modification can slow the disease. It can help X, Y and Z. And I want to make sure, you know, I think we would do better if you take a medicine and then I will shut up and let you take. Tell me how you feel. So I really think that it's a collaboration and it's really a joining of minds where you bring your information about you because you're a, you expert to the table and I bring all the stuff I read and have experienced as a clinician to the table and then we see where we align. Would I like that person to start a disease modifying therapy? Yeah, I would because I believe that would help make them have a better outcome. But that doesn't make them bad or naughty or wrong if they see it differently. Yeah.
- [04:24]
B
And that's why we say that one of our pillars is taking a disease modifying therapy in line with the recommendation of your neurologist. That also, you know, feels right to you because. Right. Different people have different tolerance for the risks, for the different side effects. And obviously people can always change their mind along the, along their journey as.
- [04:44]
A
As well, I am very fond of the phrase I want you to take the most effective disease modifying therapy that you're comfortable taking. And both parts of that sentence are important. I want you on the most effective drug that you're comfortable taking and that that might not be a drug at all. Right. So. So I really think that's where a discussion must be had.
- [05:06]
B
Yeah, great. What are your general Recommendations for managing persistent swelling in the feet or the low legs. This person has primary progressive Ms. They can walk a few meters. What types of things can people be doing if they're not able to really get up and exercise? Maybe the way they would like to.
- [05:26]
A
So, unfortunately, this is a very common presentation. It's very common in clinic that someone will show me a swollen foot or two swollen feet, which is uncomfortable. Sometimes it makes it hard to put on socks and shoes. Sometimes it can actually cause skin breakdown. Um, at minimum, it's, it's uncomfortable and unpleasant. The very first thing that we must do is figure out why. So we want to make sure that it's not because of congestive heart failure. Right? So, so if there are, are concerns on the table, we might need to invoke the assistance of a primary care physician to rule out some scary words about the heart or what have you. Now, common things being common, this can be caused indirectly because of Ms. And let me explain. When you walk and you flex your calf. So I'm pretending my arm is my leg, right? So you flex your calf as you walk. The calf squeezes the blood back up, so your heart pumps it down and gravity helps. And then as you pump your calves, as you walk around your neighborhood, you push the blood back up to the heart. That's the venous return. So sometimes we call the calf the venous heart. When Ms. Makes it so that you can't move very well, not only do you not walk as much, but you don't wiggle your legs as much. Some patients may find they don't really move their leg unless they pick it up and move it. And that leg is just sitting stationary. Gravity and your heart keep pushing the blood down, but you don't have that calf pumping, pushing the blood back up, and so it will pool. So what do you do about that? Well, if you lived upside down or if you like, tied a rope around your feet and hung yourself upside down, then you would never have swollen feet ever, because all the blood would drain away from your feet. Now you're. Your hands would swell, and it's not cool to be upside down. So in absence of doing that, there are some less draconian maneuvers. Step one is to put a red brick under the, the foot of your bed, like just 2 inches. So you're just bringing the foot of your bed up a smidgy smidge. Now, you don't notice that you're in reverse trendelenburg, but when you lay in bed, your feet will be above the level of Your heart, which means the whole time you're sleeping, you're going to drain your legs. Then when you wake up, I want you to wear compression stockings, but they're basically like white nylons that are really, really tight in the toes and they get looser as you go up. And what they will do is they'll help keep the blood from flowing back down. Once you wake up and put your feet down and your head up. Another thing that you can do is during the course of your day, if you have a moment of repose, let's say you're going to take a load off and lay down on the couch, do so with your feet above the level of your heart, even for a half an hour, and it will drain the fluid. Things like massage can help. So if you have a village member that you can trick into massaging your feet, that can help a whole bunch. And then of course, any movement that you can do will of course help a whole bunch. So that's a great question.
- [08:23]
B
So moving on to some pharmaceuticals. So Eva Brutinib failed in its trial, but this person would like some clarity on will other BTK inhibitors such as Tolebrutinib in the Hercules trial for progressive Ms.
- [08:42]
A
So just to set the stage for folks that are listening, we are actively involved internationally in developing better Ms. Medicines. There's a huge international effort of like minded clinicians and scientists and manufacturers that are all trying to develop better drugs to help people with Ms. Live a better life. And there is a class of drugs which is aggressively being studied right now by no less than five manufacturers with five different products. And, and they're all the same class of medication called Brutein tyrosine kinase inhibitors or BTK inhibitors for short. And these medicines have largely been tested in phase 2 clinical trials and found to be very, very impressive. So when we studied these drugs in phase 2 clinical trials, the results were like really like knock your socks off. Impressive. Like, wow, we should study this a lot more. So all of these drugs except one, are now entered into phase three. In the phase three trial is what the EMA and the FDA use to determine if they accept a drug, you know, for their respective countries. And it's really the real deal. Holyfield trying to decide, does this drug work in the Ms. Population to slow disability, to decrease relapses, to improve the mri? Now there's five clinical trials going on right now. In one of the clinical trials completed, so it was the first one to be done and it was the first one to get a readout and that trial was made by a manufacturer named Merck, and the drug was Evobrutinib. And it was pitted against a drug called Aubagio, which is an Ms. Medicine. And we have the top line data. The paper has not been published yet, so we don't have all the details, but we have the top line data. And much to our chagrin, it didn't work. But I want to explain for a second when I say that what exactly that means because it didn't work, not because the drug didn't perform well. Actually, evobrutinib was. Was amazing. It demonstrated a really, really low relapse rate. Like, it looked like a very, very good drug. Here's the weird thing. The comparator Abagio also did amazing. In fact, Abagio in this trial did three times better than it's ever done in the history of the universe. So because the comparator did so well, it didn't show a difference between the two, and as a result, it was a negative trial. Does that mean evobrutinib doesn't work? Well, not in my opinion. It just means that the Abagio, like, outperformed expectations. Now, the question was, what does that mean for the rest of the molecules? And the answer is, we have no idea. The molecules are different. So, for example, you mentioned tolobrutinib. There's phenobrutinib, there's remibrutinib, there's all these other BTK molecules, and they're not the same. Some of them enter the brain better, some of them don't do it as much. Some of them bind irreversibly, so they can't unbind. Some are reversible. In other words, the differences in the drugs are why the trials are so darn important. So Aaron's opinion is that it's too early for us to weigh in. We don't know yet. We will probably learn the definitive answers over the next three years as the trials complete and as we get the readouts. And my best advice is you got to hold on because there's too many variables for us to to know just yet.
- [12:03]
B
This person had f their first MRI in 12 years, and it did show signs of disease activity. However, the patient feels really well. What's the discrepancy between lack of clinical symptoms and these MRI results? And what does it mean?
- [12:21]
A
That's a very excellent question. So when we're trying to help someone live their best life despite having ms, we use different metrics to sort out how they're doing. And I would submit to you. There's really three that I think about. The most important is the litmus test of life. It's your lived experience because you're a you expert, so you know all about you. Like, you know, like, how all the things go inside you because you're with you all the time. So capturing your life experience is the most important thing, in my opinion. And how do we do this? We ask you questions, we have you fill out surveys, right? Have you had an attack? What's your energy like? How is sex going? Are you sleeping? I mean, we're trying to figure out life, right? So that's the first thing. The second thing is what I call the Ms. Olympics. When you go to see the clinician and they have you do all this stuff, that stuff is not teasing or making fun. That stuff is a diagnostic test to assess how your nervous system works. The third tool is structural imaging. So the MRI machine takes a picture of the structure of your brain, and you can look for new structural damage, which in English means new brain damage. So when we're trying to assess that someone's doing okay, I want all three to be awesome. Litmus test of life. You're killing it. No attacks, no loss of function. Your Ms. Olympics looks just as gorgeous as the last time I tortured you. And there's no new brain damage on your imaging. You don't have. They don't have to align. Here's the thing. If one of them is not okay, we're not doing okay. So you can have an MRI that is clean as a whistle. Looks just like last time. Congratulations. And your exam can look gorgeous just the same way it did last time I examined you. And you can be doing horrible, Right? So just because in this example, the scans are okay and the exam's okay, we're not doing okay because you're not doing well in the litmus test of life. Maybe you're not able to keep up at work, or maybe you're falling, God forbid. Or maybe you can't feel your left leg. Similarly, if you feel right as rain, things are really good in your life and your exam is unchanged, Congratulations. And we see that you have new brain damage. Well, gosh darn it, that's not okay. And when we get an MRI and we see new disease activity, new structural brain damage, that is teaching us that we're not doing okay, even though we don't realize it yet. And it gives us a window of opportunity to make a potential change to prevent the human body from catching up to the mri. So Last comment. Sometimes a patient will say to me, I don't need an MRI this year because I'm doing great. That's backwards. When you're doing poorly and you have an attack or lose function, I don't need an mri. I have you teaching me that we're not winning. It's when you are killing it, doing your best job at living life. I want to check under the hood to make sure that everything aligns. That's when I need an mri.
- [15:12]
B
Do you have any opinions on lion's mane or reishi mushrooms? That's really popular right now. Is there any evidence that that does help with reamyelination?
- [15:21]
A
So, so I love that question. So I. Yes, I have an opinion. And then I'll. And no, there's no evidence. Okay, so let's talk about it. So I think that functional mushrooms are really cool. Like, like I find them to be academically and intellectually fascinating. And functional mushrooms are defined as mushrooms that seem to have some benefits to human health. Now there's gazillions of mushrooms but there's just a handful like, like less than 10 that that are considered to be functional mushrooms. And amongst them is lion's mane. Now it looks like when you take lion's mane that there are actually some very interesting chemical things that happen in the brain and it looks like it might promote brain growth. And there are some mouse studies we are not but, but there are some mouse studies that suggest that that may in fact be the case. The data in humans is not really very good. Right. And the data in Ms. Is really kind of non existent. I have many patients in my practice that want to take lion's made in helps, that it might help them with their attention, their memory, their cognition and their energy. And I think that's awesome. I have three rules when we're talking about a non allopathic medicine like a pill. Okay. Number one, it can't be dangerous. Now lion's mane is not dangerous at all. Number two, it can't be expensive and I can't comment on that. Every family has to determine if like buying lion's mane is expensive for their household or not. Generally speaking, I don't think lion's mane is very expensive to purchase, at least here in the United States. Number three, I would prefer if it was not instead of something that I know works. So if you said I'm going to stop all of my medicines and only take lion's mane, I would be nervous about that. But if you said I'm going to keep on Keeping on with all the things that we've been doing. And I want to add lion's mane, I would say. Oh, great. Take really good notes and let's find out if you notice any benefit on the research front.
- [17:16]
B
Is there anything else you want to add for new DMTs?
- [17:19]
A
One thing which I'm very excited about is yet another class of medicines which are coming after the BTK inhibitors. So. So this is kind of looking deep, right? And if we go back a little bit, B cell medicines, medicines that deplete B cells, are very effective to treat Ms. So we figured this out. So there are a bunch of medicines which are currently available to treat Ms. That work by depleting B cells, but they can increase risk of infection. That's one of the reasons that the BTK inhibitors are so attractive, because they shouldn't increase the risk of infection. There are medicines coming after the BTK inhibitors that are called anti CD40 ligands. These medicines also block B cell signaling without murder. So they block the ability of the B cell to piss off the T cell to attack you. But again, they do it without murder. And there's one drug which I call Frexa, which we've actually started at the Boster center to study. And so we're now enrolling patients into one of two trials. There's a relapsing trial where they get an infusion once a month, which is either real fretza or dummy drug, and they take a pill once a day, which is either real, a Baggio or dummy drug. So everybody's on a real drug. We just don't know which one's real. And that's a study that has just launched and we're enrolling for it, and we're very hopeful and excited about that. Also, we're doing a very similar study in secondary progressive multiple sclerosis using Frexa. So this is very early times, but it's scientifically very, very exciting. So more to come.
- [18:52]
B
Are there any cancer susceptibilities to certain DMTs due to changes in the immune system that people should weigh up when they're deciding which drug to take?
- [19:01]
A
Yes. So if a doctor tells you that a drug doesn't have a side effect, leave, like, go, go find a different clinician because they're not telling you the truth. Because I'm not aware of a single drug that doesn't have some side effect. Even the water that I'm drinking in excessive amounts can cause, like, problems. So. So we, we can't talk about the, the benefit of a drug unless we also talk about the side effects and risk of that drug, because it's a package, you don't get to only do half. And when we think about manipulating the immune system with these medicines, we think about a couple things. We think about the medicine's impact on the liver and kidneys because it's processed by the liver and kidneys. Oftentimes we think about suppressing the immune system in the side effects, which include an increased risk of infection in some cases, and in some cases an increased risk of cancer. Now, that's not to say that every single drug has an increased risk of cancer or infection, but these are the conversations that we must have. So when you talk to a clinician and they say, ooh, ooh, ooh, try this drug, say, okay, what are the side effects? And then you're going to talk through those side effects. Talking about cancer, for example, I'll use an example of a drug called cladribine. So cladribine is an oral medicine for Ms. It's one that I think is very good. And this medicine looks like it increases the risk of cancer by about, I would estimate about one to one and a half percent compared to the general population. The FDA here in the United States recommends age appropriate cancer screening, which means, like when you're of the age of the mammogram, you get the mammogram, and when you're of the age of the colonoscopy, you get the colonoscopy. You know, by making sure that we do age appropriate cancer screening, we should be able to safely monitor someone taking the mavenclad drug. My point here is I don't want to throw the baby out with the bath water. And I think that we have to think about the risk benefit of a drug inside the context of the risk of the disease. And oftentimes bluntly, I'm much more scared about under treated or untreated Ms. Than I am about the side effect for something that I can monitor and hopefully control.
- [21:03]
B
Do you treat secondary progressive Ms. With mavenclad? What's your opinion on that?
- [21:08]
A
All day, every day? Yeah. So I think one of the biggest detriments to the field of multiple sclerosis are labels like the one that you just brought up. Now, that is not me being critical of you saying the word secondary progressive ms, but the fact that we coined this term, I think is actually a huge detriment to the field. Let me tell you a not secret. There's two kinds of Ms. As best I can tell, there's progressive forms of Ms. Like primary progressive Ms. Where people have a slow progressive decline from the get go. And then there are are relapsing forms of Ms. Now within the concept of relapsing Ms. We have clinically isolated syndrome and relapsing Ms. And secondary progressive medicine. And quite honestly those are inappropriate incomplete outward descriptions of a disease. They when you say someone has SPMs, you are commenting on an outward description which doesn't give you any actual information about their disease process, which bothers the hey hey out of me. The reality is when someone has a relapsing form of Ms. They are at risk of relapses, period. Now the human when they were younger in chronologic age is at a higher risk of relapses. And the same human when they're slightly older chronologically are less likely to have relapses, but they can still have them. Someone with so called secondary progressive Ms. Can have attacks, it's less likely and they're way less likely to bounce back. Now that same relapsing person early in their disease can have progression of disability early when they're young, they're just less likely to have progression as compared to when they're older. So I think sometimes we have a dumb understanding. When I say we I mean doctors that there's like phases, like there's like the relapsing phase and then we draw a line in the sand and then there's the secondary progressive phase and that's simply not accurate.
- [22:54]
B
Yeah, let's do a few on women's health with ocrevus. Can you talk through the family planning and the timeline besides the labels recommended of the six months of an infusion, is there anything more specific you can dive into?
- [23:06]
A
Yeah, I can talk about a really cool French study. They did a bang up job studying ocrevus and pregnancy. So take one small step back. Back in the ancient days of yesteryear just a couple years back, the most avant garde style of helping a woman become pregnant was to tell them, stop all drugs. God forbid you take anything, you'll explode. And we would take someone off drugs and it was horrible. And we would watch people have disease activity and I felt like a schmo, like it was awful. Then we realized that it was probably okay ish to take the injections. So we would keep women who wanted to conceive on gluterimaracetate, code name for copaxone or the interferon beta products. And then we realized that natalizumab tysabri is actually safe to conceive. And for the first two trimesters. So before this French study came out, like circa 2016 forward, the bee's knees was to get on tysabri, become pregnant on tysabri, carry the baby for the first two trimesters, stop the tysabri, finish the third trimester, and then deliver. And that was like the best that we had. And I used to do that all the time. So. So there's a French study that looked at that tysabri against a new way of doing things with ocrevus. Here's what they did. A woman's on ocrevus and she wants to conceive, so she gets her ocrevus and then six months later she doesn't get another ocrevus and then she becomes pregnant. And then she gestates for nine months, no medicine. Then she delivers, and then she. In the trial or in the observation, women were allowed to, of course, breastfeed. And on average, they breastfed for 120 days. So not like, not a small amount of time. And then only after the 120 days, they restarted ocrevus. None of the women in the French study had a single attack in the ocrevus arm. Zero. None. It was amazing. It was really, really impressive. And that was way better, actually, than the folks on the tysabri arm.
- [25:00]
B
Another women's health question about menopause and perimenopause. How are. How are women with Ms. To be affected by falling estrogen levels? Do you recommend that your patients take hrt? Do you have any other suggestions for people entering a perimenopause stage of life?
- [25:16]
A
This is an area where I think a lot of practitioners are missing the boat by not paying attention. I also want to give a shout out to a friend of mine, a doctor named Dr. Riley Bouve, who is a brilliant woman at UCSF in California who has done some of the most provocative work on this area. So there are three hormones that tend to start to slow down or. And this really actually starts like late 20s, early 30s, and then into your 40s. And these include estrogen and progesterone and then anti malaria and hormone. Oftentimes a woman will go into a perimenopausal state in the 40s, 45 ish, where as the hormone levels drop, the. The menstrual cycles may become irregular. And then oftentimes around 55, there may be a period of time, pun not intended, where there's no menstrual cycle for up to a year. And that would be Defined as being in menopause. Well, the hormonal system has a massive impact on Ms. And when you look at men and women who are newly diagnosed, men get worse faster and men progress faster than women until menopause. After menopause, the rate of progression in women starts mirror that of men. In other words, it gets a little faster. Moreover, there are a bunch of symptoms of menopause which sound like Ms. So for example, a woman going through menopause, no Ms. Can have cog fog, depression, anxiety, insomnia, fatigue, bowel dysfunction, bladder dysfunction, sexual dysfunction on top of the hot flashes. And so you can sometimes see, and I see this frequently, a woman in their 50s ish has an uptick of symptoms of Ms. And I think this is an awesome opportunity for collaboration with the obstetrician gynecologist. The data would suggest that if we supplement estrogen, we can help some of those symptoms. When you give estrogen and progesterone together as hormone replacement therapy, you increase the risk of cancer. And so I ask oftentimes during these conversations to avoid the progesterone, let's just do estrogen, which for the immune system is all I really need. Secondly, sometimes when you take oral hormones, it can increase the risk of blood clots like deep vein blood clots. And so a topical, like, like a patch doesn't do that. And so I will actually oftentimes ask the gynecologist to please consider hormone replacement therapy with estrogen only patch if they are not able or willing to do that. And there's a multitude of reasons why that's not the best thing for a woman's health. There are other things that we can do. For example, there are supplements, natural supplements like Black Kovacs, which can be purchased and taken, or there are medicines like SSRI antidepressants which can help with many of, I'm not talking about depression, but many of those perimenopausal symptoms. So the bottom line is sometimes nature's too generous and you can have Ms. And then you can have worsening symptoms and progression because of menopause and we shouldn't take it laying down. And I think it's important that A we educate about it. So thank you for asking that question and B it's actionable. So it mandates in my mind a conversation, a three way conversation between human being, their neurologist and their gynecologist.
- [28:33]
B
When should you stop a dmt? During long periods of disease inactivity. And can the lesions disappear? If the lesions do disappear, will your symptoms Subside? Will feeling return? Will you lose the pins and needles? Like, how are, how are those things related?
- [28:48]
A
Two very important questions. Let's take them each in turn separately, because I think that they're separate key points here. So the first question is about when to stop a medicine. And there's really two schools of thought here. There are neurologists who believe that after the age of 55 ish, particularly if you haven't had any new relapses, that you can stop medicines. And they are wrong. I must find myself in the other camp where we believe, because of strong data, that if you stop medicines, that about a third of those people have a faster progression of disability. So I've made my bias rather clear in my answer. I believe firmly that we should stop treating at death. But up until the point of death, it's my opinion that the, the best course of action is to continue to help protect the nervous system from the aberrant immune system. If you are, let's say, older than 55, let's say you're 60, which in my mind's like the new 30, but. So you're 60 and you have neurological functions that you like, like seeing or having an orgasm or tasting food or, I don't know, moving your finger around. Right. If you like those, then I want to do something to help protect them. Right, because you're not dead yet at 60, in fact, you're nowhere near being dead. And when you stop the MS, medicines in populations of people that are 55 and 60, and then you watch what happens, one third go on to progress and we don't know who they are. So I want to keep on keeping on. So. So a lesion is a doctor word for a white spot. On the mri, we call that a lesion. And when you look at that space under, like a microscope, it's an area of damage where the immune system caused inflammation and it left a puddle of water, like a microscopic puddle of water. The lesion doesn't tell you whether there's new damage that's occurring or whether it's trying to recover and repair. It doesn't tell you whether it's demyelinating or whether it's remyelinating. It just shows you the location. So depending on the underlining pathology of that actual lesion, sometimes they can get a little smaller with time, sometimes they can continue to grow, and sometimes they just stay there. Now, there are plenty of exceptions to the rule, but what I would like to convey is most often the lesion is essentially a scar and it doesn't go away. And if it gets smaller, that doesn't always mean good things. There's actually this weird data that if you look at lesions as someone ages, sometimes as they get smaller, that's because the brain is shrinking too fast. So it's actually like a very complex situation, and we need to become more savvy about the specific pathology of the given lesion before we can say anything, you know, more intelligent.
- [31:31]
B
What about early onset Ms. In children? Is there an increase in diagnosis because we have better tools, or is there something that's happening that more kids are getting ms? Is there any good news on pediatric ms?
- [31:47]
A
Absolutely. So. So that's a series of really important questions. Let's try to go through them. Pediatric onset Ms. Is not new. Right. So, I mean, we've been studying children with Ms. For a very, very long time, and I'm not aware that there's a statistical uptick in, like, there's not a pandemic of children developing Ms. That I'm aware of. I do think that there's a massive increase in general awareness about multiple sclerosis, and I think this results in coming to the attention of clinicians faster. Now, that's conjecture. It's a godsend that we can diagnose people faster. You know, if you and the United States sneeze a lot and go to an emergency department, there's a chance they'll get an MRI as part of their. Your diagnostic workup. And we have a very low threshold to do imaging. And so I think we're finding things sooner in some cases. Interestingly, prognostically, having a pediatric onset is a better prognosis than having a later age of onset, which most people don't know. Now, because the child is developing symptoms at a younger chronologic age, they may accrue disability at a younger chronologic age, but they went a much longer timeframe before they manifested that. Now, as. As far as good news, there's a lot. Right now at the Boster center, we're participating in a really exciting clinical trial called the Operetta trial, which is studying not one, but two drugs to treat kids to see which one's better. Every child in the trial is receiving a pill once a day and an infusion every six months. The infusion is either ocrevus or dummy drug, and the pill is either gilenia or dummy drug. One of them is real, one of them's fake. And it's a very, very exciting trial to see if we can prove efficacy of these High efficacy, exciting medicines amongst munchkins.
- [33:33]
B
I'm going to pivot a little bit to vitamin D, which is one of the pillars of the Overcoming Ms. Program. And this person is wondering why there is such a debate and lack of agreement among what dosage to take. They're citing studies that say a dosage of 10,000 IU is safe and effective. Some neurologists seem to be working on outdated sources of information and are recommending a much lower dose. What can you tell us about vitamin D?
- [33:57]
A
So several things. First of all, Overcoming Ms. And Aaron Boster are aligned that supplementing vitamin D is a really, really good ide idea. I think that the totality of the data suggests a very strong association that when you look at a population of people with Ms. With a higher level of vitamin D, they that is associated with much better outcomes. So like less new lesions, less brain volume loss, less disability progression, less attacks like stuff that we want. So that's pretty awesome. And just real quickly, there's three ways that you can obtain vitamin D. If you go out naked into full sun for 15 minutes, you will absorb more than 5,000 international units of D3. Another way to do it is with food. And so egg yolks and fatty fish like say salmon or tuna, those are very high in vitamin D. But oftentimes here in Ohio we need to shoot for at least 5,000 international units a day and that would be the equivalent of an entire salmon, like the whole freaking fish. So very frequently, at least here in Ohio, we recommend people take supplementation. So there's D2 and D3. And I recommend D3 because D3 is better absorbed in the human body. It's the bioavailable form. It's the form that your body makes when you see sun. And so I think it's a better option. And the amount is, is actually the question. So the reason there isn't an answer is because there's no money in it. So no manufacturer is going to make a mint by proving exactly how much to take. And so I don' going to find a legitimate big study that's going to answer the question. But I don't think it's a mystery because I treat to a target I can draw a lab and it'll tell me your vitamin D level. I want that number above 50 but below 100. So how much, however much gets me that number. So if that's 5,000 a day or 10,000 a day or 50,000 a week or 100,000 a week, whatever it is, we're going to give you that amount to get in that range. So at the Boster center we check labs about twice a year, always in the wintertime when the the sun is not present. And then we supplement accordingly.
- [36:02]
B
Okay. This person was diagnosed eight years ago and their neurology team has never mentioned diet and lifestyle as an important component to their Ms. Treatment plan. Why isn't this part of the guidance? Why isn't this part of the literature? Why aren't all neurologists on board like you are with the whole array of things that we can do to help ourselves?
- [36:24]
A
Lack of education in allopathic medicine is the answer. That's why. So I went to a traditional allopathic med school. I'm an md. Transparently my education about physiotherapy, occupational therapy, speech therapy was minuscule. And it got a little bit better when I was in neurology residency, but not very much at all. And my education about nutrition was almost non existent. I'm very embarrassed to say it to you now. I have been rather mission driven to help families impacted by Ms. Live their best life. And I have become convergent with overcoming Ms. As I do learning, I realize more and more the value in this example of diet. And so I think because of that I have done a lot of extra learning on my own to become more competent in my conversations with patients. That doesn't solve the problem and it is a problem. And so this is one of those opportunities to encourage people to be their own self advocate. I am delighted that this person stumbled on arguably one of the most comprehensive, best thought out behavioral tools to improve your life in Ms. That I've ever seen. And I wish that it was more common, particularly here in the United States. You know, I ask people to be 5 for 5 and they're fighting against Ms. And as I rattle these off, they're going to sound very, very familiar to OMSers. Number one is to not smoke stuff. Smoking speeds up Ms. By 50%. It doubles the risk to develop Ms. And stopping smoking slows it down. Now behind that is a really big conversation about other cardiovascular risk factors and brain health. Number two is to exercise as part of your lifestyle, which means it is woven into the fabric of your week. You're not punished when you don't do it and you're not rewarded when you do it. It's just something that you do and it needs to be integrated into just part of your daily activities like brushing your teeth and wearing clothes, if you wear clothes. Number three is to eat smart. And this really gets into a tremendous amount of work for Pitt, particularly for red blooded Americans, as we learn to increase our water game, as we supplement vitamin D and most importantly as we avoid heavily processed foods, sugar laden foods, fried foods, fast foods and foods with ingredients that you can't pronounce because those are not foods, those are chemicals. That's number three. Number four is the daily practice of mindfulness. Actively being in this present moment without prejudice. You need to be in the moment, thinking about the moment to be mindful. And that is so important because stress worsens Ms. And mindfulness is a tool to learn to manage stress in. As I speak about being five for five, Number five is to take the most effective DMT that you're comfortable with and make sure that it's working. And so to the OMSers listening, that should sound very, very familiar. And that is me learning and becoming convergent. With all of the collective wisdom collected into the concepts of oms, what are.
- [39:32]
B
Your best recommendations for cold and heat sensitivity? How can we best manage this symptom?
- [39:38]
A
So, so we have to be planful. So let's talk about winter. We have to be aware that winter is a fall risk because it's slippery outside and unfortunately if we're not careful we could slip on ice and God forbid shatter a hip or something bad like that. We have to be aware in the winter that the cold ambient temperatures can make spasticity much worse. And we have to be aware that we're going to go from freezing cold outside in Ohio to really, really overly warm inside. And so we have to do things like wear lots of layers. We have to allow time to get inside and take layers off so you don't overheat and to put layers back on. We have to time the activities that we do. We have to stretch more often and take extra baclofen. There's a host of things that we have to do to be prepared for winter weather. Let's take heat and in the setting of heat we can see motor fatigue and heat sensitivity. People will feel like their energy is being zapped. And so we can do things like use cooling vests. We can do things like hydrate with ice water to cool us from the inside. We can do things like seek out activities to exercise in water where the water wicks away the heat. We can also time the activities of the day so that we don't go for our, our, our daily constitutional walk in high sun. We can choose to do that before the sun comes out in the morning. We can mow the lawn as the sun is setting in the evening, so we have to be very thoughtful. We might take advantage of things like ampyra, which is in Europe, fampyra for aminopyridine. Because in the people who respond to it, we find that that actually buttresses against heat sensitivity. So the bottom line is temperature massively can affect Ms. And I have patients that have trouble in the winter and they have different trouble in the summer. And so by being planful, we can game out how to continue to live your best life.
- [41:22]
B
How soon will we see drugs that help to repair damaged myelin?
- [41:25]
A
And within five years.
- [41:27]
B
Amazing. How much do you think mental health and Ms. Are linked?
- [41:31]
A
Like 90%? Like a lot? Like a bunch. A bunch.
- [41:34]
B
Do you know of any possible long term side effects with Casimta?
- [41:38]
A
No, I don't.
- [41:39]
B
Do you recommend taking dietary supplements that have been clinically proven to be beneficial to ms, that such as lipoic acid, propionate, high doses of omega 3 fatty acids like DHA and EPA.
- [41:54]
A
So without getting into the weeds, there are some value in both those. I think the omega 3 fatty acids is absolutely on point and I think that's an excellent supplement for people impacted by Ms. Alpha lipoic acid has some data for pain control in neuropathy, which is not Ms. Some of my patients feel that it helps them with neuropathic pain, some don't.
- [42:13]
B
Are there benefits to red light and near red light therapy for people with ms?
- [42:17]
A
I don't know. Although more recently I've seen some very provocative early data that suggests that red light therapy may actually alter the immune response. So my answer is I really don't know.
- [42:29]
B
Can you give us a brief overview of what is smoldering ms?
- [42:32]
A
So smoldering Ms. Is a new term for an old concept which is allowing us to be more accurate when describing Ms. And opening our eyes to new research opportunities. Many people listening to this experience the following. They go to see the neurologist and the neurologist is all happy because the MRI is stable and their exam looks stable. And they say, yeah, but why am I doing worse? And a lot of patients are frustrated by the fact that they haven't had a new attack, they haven't had new spots, and yet they're not doing as well. Right. So what is that? That's smoldering Ms. It's a slow decline of function in the background. And the reason it's so important to talk about it is it's honest. Right, so. So our medicines can stop inflammatory aspects of Ms. Better than they can stop the smoldering Ms. And so acknowledging it is to be honest with the human being about their experience, please. And it allows us to be honest about our research needs and about finding new, new, successful therapeutic avenues.
- [43:36]
B
Great. Do you know of any connections between Ms. And thyroid disease?
- [43:41]
A
Yes. Interestingly, people impacted by Ms. Might be slightly higher risk of other autoimmune conditions, chief amongst them being thyroid. Also, people impacted by Ms. Have a slightly higher risk of thyroid cancer, it would appear, compared to the general population with a risk of about 0.3. So not, we're not going to really high, but it's, it's higher than the general population. So it's not uncommon that thyroid can be a little bit, you know, awry. Some of the. Depending on which medicines we're using, we may need to monitor thyroid. So for example, interferons can mess with thyroid. The alemtuzumab can mess with thyroid. So I find myself checking thyroid frequently in my practice.
- [44:21]
B
What's the best way to support a friend who's newly diagnosed?
- [44:25]
A
That's a great question. So being a good listening ear means not giving them dumb advice. So. So being an active listener, just listening can be really, really helpful. Believing them when they tell you something can be really, really helpful. Going to the overcoming Ms. Website and learning or going to my YouTube channel and learning to up your game to become a smarter friend is a really, really great idea. Making it known that if they need a help with something that you actually mean it. And so following through and saying, you know what, I'm going to make an extra, an extra portion of dinner, let me drop it off for you, is a beautiful, beautiful gesture and a great way of being a good friend.
- [45:03]
B
Are there any drugs or supplements that can slow the brain shrinkage that is associated with ms?
- [45:10]
A
There's, there's one that is really, really potent. So get out a pen and paper because I want you to write this down. Ready? Exercise. Exercise is arguably some of the very, very best data to slow brain volume loss. And it doesn't have to do with ms, it has to do with brains, because you can do that. Like octogenarians that exercise have larger, more plump brains than those that don't. So exercise is, hands down, one of the most robust ways I've ever seen of slowing brain volume loss. It is absolutely the right thing to be doing.
- [45:40]
B
Thank you. Thank you so much for your time, for your expertise, for joining us today. We really, really, really appreciate.
- [45:48]
A
It takes a village, and I'm honored if I get to be a participant in a village member. And as always, thank you for including me guys. I look forward to doing this soon, I hope.
- [45:57]
B
Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode, and please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mab Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share? Email us@podcastvercomingms.org we'd love to hear from you. The Living Room with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.