Transcription
Uh, maybe ask Dr. Sahan to come to the front as well. So we have about 30 minutes to to kind of deep dive into this with the kind of Q&A. Um, I want you to think about your questions, but but maybe just to start, um, I love asking patients for advice and maybe I can ask you and as a way to start, does anybody have a piece of advice for fatigue that they always tell either their mentee or on support groups, their caregivers, loved ones that works for you and is willing to share with a group?
Nobody has anything. Oh, okay. I know mine is eat a good diet like lean protein, whole grains. You know, once I cut out eating so much junk, it's I seem to have less fatigue.
So maybe just to follow up with that. So one of the reasons we developed the Mediterranean diet looking at fatigue for a lot of reasons, but one of it was because I had patients coming to my clinic that said they changed their way of eating. In fact, saw a dramatic reduction not only a little bit in their waistline but also in the way that they were feeling. So as we looked at the literature, this idea of Mediterranean diet has been impactful in things such as RA and lupus. And I know we talked a little bit about that yesterday. So we're really excited, but this is one thing that the FDA doesn't necessarily care that fatigue is a primary endpoint. We want to know that we're going to change the trajectory of this disease. Going back to our patient cases or that discussion we had yesterday, it's much about delayed progression. That's going to be the focus as we think about clinical trials. But again, we're advocating as the drug companies are building these studies, we're pairing in quality of life measures to see if it's changing that as well. So, I think that's really, really important. Anybody else made any dietary changes that they've noted to impact fatigue?
So, after last year, I was in the hospital. Long story. It wasn't related to liver disease. It was um appendix exploded. But um, basically what I learned through that process and it's helped me with the fatigue is having more protein in my diet, decreasing your carbs because that's what I would always have. I'd have a bagel in the morning. I wouldn't have protein. I lack the protein in my diet. But I've seen a huge change with that getting rid of the carbs, cutting back on sugar, and moving forward with more protein, especially through the day. So it's been a big help for me.
That's really great. Did Did somebody else raise their hands over here? Share your dietary piece.
I actually cut out a lot of things. Well, because I was also celiacs, I cut out all grains. I just cut out all grains even if I could have rice or anything. Um, also no sugar and I took out dairy and I feel a lot better.
So, if that just gives you a flavor, uh, one more comment.
Yeah. Um, uh, about once or maybe twice a month, I go on a liquid fast. And if I fast, I'm telling you, the next day I have tons of energy. And I'm thinking maybe the fasting is giving my organs a break. You know, they don't have to work so hard digesting food. I don't know what it is, but I would suggest that.
Thank you for that feedback. And again, as providers, I'm constantly looking at patients to teach me so I can teach other patients as well. Again, we're building a toolbox that we can apply to a lot of patients. And it starts with you. So maybe we'll pivot a little bit and ask the floor for any questions for I know it's an interesting mix, but derm and fatigue that we can talk about. Does anybody have any dermatologic questions?
Thank you. So, sunscreen, I try to go with what Consumer Reports recommend, and I invariably end up with something that's greasy, nasty, white, it gets on my clothes, it gets on my car, it's it's just nasty. And so, I would I would from anybody, is there a sunscreen I can use that won't get all over everything and make a giant mess? I hate it.
Absolutely. This is actually I I'll give some answers, but this will be one also to crowdsource. I think I'll be interested, too. So, I think the tinted mineral sunscreens generally go on with what's called a matte feel. M- A T. And sometimes you can search those things if you like how this feels. It feels a little bit more dry and not as greasy. I do like the mineral tinted sunscreens. So they have a tint to them, especially if you if you first they come in different tints from as dark as the skin goes to as light as the skin goes. I'm wearing one right now. [clears throat] So um I I think that's where I would start. So what type of brands then? So they sell Caravee mineral tinted sunscreen at the grocery store as well as Eucerin sensitive mineral tinted sunscreen. These generally run about $12 to $15 here in Indiana. So, I like those. They're good for uh they're good for sensitive skin. They have this matte feel. You can get them in various tints. So, that should apply for everyone in this room. [clears throat] A Cadillac sunscreen that some of my cosmetic uh colleagues will um will recommend. It's a good sun, it's an excellent sunscreen, I should say. Um, and about $40 is something called Ulta MD sunscreen. So, why do I recommend this one? It's good for sensitive skin. I believe it passes the Consumer Reports um the Consumer Reports test if you don't know what she's talking about. Consumer Reports every year will test the sunscreens. You may be surprised at how little your sunscreen is actually protecting you. Now, they can't test everything, but I do think this is a valuable resource. Um, as I [clears throat] said this Alta MD1, this is funny because I think a lot of the cosmetic dermatologists love this. I saw some heads shaking. No, they don't like it. So, I would love to hear someone's feedback on that.
It's greasy.
It's greasy. You feel that way, too?
Interesting. Okay.
Wow. So, so this is kind of funny. In dermatology, in the world of cosmetics, we're kind of we're science, but sometimes we blend into this consumer and the marketing. And so again, when I make my recommendations, we do recommend things that it's it's a market. It's a little bit of buyer beware. I think the Eucerin mineral sunscreen, sensitive [clears throat] skin sunscreen as the Cave give equal amount of cosmetic elegance and protection as the Ulta MD even though their price points are vastly different. There was another hand for a derm. Perfect.
Um, I have a question about photosensitivity and rashes that come from that. And uh, I've I've had a rash on my arms for four months that I've seen five doctors for and it's apparently photosensitivity and I don't know how to get that to go away. So, um, UPF closing all all the stuff I do, all this stuff. So is that something that does go away once you have photosensitivity or is that just a lifelong thing that we have to adapt to?
So I think this is tricky um to give general advice. Um I think speaking, let me try to answer. I do want to answer you. I think um people can grow into and out of allergies. I think people are familiar of growing out of allergies. They may have they may have had asthma or atopic dermatitis and then grow out of it and then they can grow into it. We're finding so it's hard for me to answer this question individually. I think time will be the test. So how do we approach photosensitivity in adults? So one of the things we got to do would be interrogate all the different medicines and supplements. It's very common that a medicine, something coursing through your bloodstream can as an adult as you add on these medicines, it becomes more and more a common cause of photosensitivity and then it becomes pick your poison. If you can easily get rid of that medication and give it a try for three or four months so it can wash out, then that could be one way that it can be handled. However, there are people who grow into photosensitivities and then this can be what we say is endogenous, intrinsic to them and then this becomes like a manner of managing it. This [clears throat] can be managed as easily as what you're doing, like you're doing all the right things. You're wearing the appropriate clothing. You're probably wearing some sunscreen. You're doing doing what you can. There are people that sometimes we have to, if they have autoimmune hepatitis, we may talk to someone like Dr. Lamur, our visiting [clears throat] professors and say, maybe can we increase the immunosuppression for example? So these are all options that we can do, but we would obviously talk about it on an individualized basis. Did I answer your question?
Yeah, it certainly could be.
So, we're just going to pivot briefly back to fatigue and management of that aspect and since Dr. Go still here. We're going to maybe ask her for her approach and how maybe it's different at Stanford.
Nadia, that was a really, really great talk and I completely agree with Dr. Lambert. I'm not so sure I could have given anything better. So, thank you for putting that together and I wish I could say that I had any other strategies to use. Um, I look forward to seeing the toolkit that we can provide to our patients. I think in general, I will ask my patients that have autoimmune hepatitis if they are experiencing fatigue, but my questions are not as specific as they probably should be. So I'll ask about are you able to still work? Do you need to take a nap? Sometimes if it is on the forefront of their minds because it is the most prominent symptom that they have. We do spend a lot of time discussing how it has impacted their life and strategies for sleep, dietary changes that they can make, exercise changes that they can try to pursue, but we don't I don't have I don't have a magic answer for everyone. But we will sort of explore these themes if it is the prominent symptom. I actually very much look forward again to working with our psychologist that's joined to help with coping strategies because I very much agree with what that last quote was. It's it's it's about learning to live your best life despite the symptom if we aren't able to necessarily manage it the even if we can control the disease itself. So um I hope that there are better therapies. I hope novel therapies will also address fatigue. I think that in other autoimmune liver diseases I have you know explored and allowed a handful of patients to try. I can't say anecdotally if it's worked or not worked, but something that's out there in in the literature for other conditions. Am I allowed to ask a derm question?
Yes, you can.
Okay. Can I [laughter] um one of the things that you mentioned was using uh nasin or nasin based nicotenomide I think you said.
Can I make a um so it's actually not nascin nyinomide or nicotenomide. There's actually a nuance there with a different structure than niacin, but yes.
Nicotinomide or nioinomide. Thank you. Um, are you recommending that for post-transplant patients that are higher risk of cancer, skin cancer, as well or all all of your immunosuppressed patients that you see for screening?
So um this will be a conversation that we'll have with our patients as most things in medicine are. So the nuance there is this for [clears throat] people who are worried about um their risk [clears throat] and immunosuppressed patients, people who've had it regardless of immunosuppression, they've had precancerous cancers, yes, we will recommend this to get to your part specifically though about the transplant. Unexpectedly in the last year, this has been studied not in a general population, but in a transplant population, different than the immunosuppressed population, but a transplant population. They found no evidence in this. So, we are still recommending this. It's just one study. It does not overturn a randomized control double-blind trial, but we do talk to them about this nuance if they have a transplant.
Awesome. Thank you.
So, let me follow up. Is there any other derm skin questions? As I'm walking over there, um, can I just do a brief question for myself as well? So, this is akin to gastroenterologist and general surgeon. Who does a better colonoscopy, [laughter] dermatology or family practice? Who does a good skin screening? Who should we be going to? Um, [clears throat] so [laughter] I'm I'm Who does a Who does a better one? Okay. So, I think there's Yeah, [laughter]
I thought we were friends. So, I think I'll say is this. Um, there's layers to this. Um, and that's that's how our system is and as I as you may have heard me say, the first step is actually most things get picked up by a partner, a friend. So we pay attention to that. And then the primary cares can be like a screening for that. But I want you to imagine like a primary care physician. They got to treat the entire body, the eyes, the liver, the skin. So if it's something that is really serious or they can't tell, then the specialist who sees this all the time, they can usually pick something up, you know, from the doorway.
Uh, you mentioned about moisturizers, creams versus lotions and whatnot, but on the sunscreens, does it matter also whether it's a cream, lotion, or spray, no matter the SPF? [snorts]
Thank you. So um I think so in the delivery modality of this in terms of the moisturization, the same rules will apply. So um they actually make creams and lotion sunscreens. You're right. They have sprays and they also have gel sunscreens. So gel sunscreens, I think someone from on this side had asked about like the feel of the sunscreen. They kind of feel dry. Some people don't. They're not very popular because when you sweat, they can get into your eyes and so forth. But they exist. They feel like a little bit more dry. [clears throat] Um, the gels and the sprays purely in terms of the moisturization would probably be drying or possibly irritating if someone has sensitive skin. So in that regard, we may recommend not to use them. However, in terms of their sun protecting potential independent. So, if your skin is not sensitive, you're not worried about the moisturization, I'd rather you just get the sun protection. If that's a spray or a gel, that's fine. Um, the sprays obviously, they have some nuance. You got to make sure it's getting in the right place. You know, you can't be spraying it from so far away. But, um, again, that's independent of its moisturization potential.
So, I'm going to do a virtual one if that's okay, Christie. I'll come back to you. So one of the questions is and I get this all the time and I think Nadia does too. I may not be telling them the correct thing. No, this is still derm unfortunately. Uh, this fragile skin that we see in AIH in the setting of of some of the medications we use and even some of the non-steroidals like budesonide.
Right.
Uh, also and again in our PBC patients, I see it sometimes with ursodeoxycholic acid. So what is your take? What do we need to do? Is this purely cosmetic or is there any concerns?
Um, so I think like just to get everyone on the same page, um, what we do see is the skin can be more likely to tear. We do see that there can be some more bruising. Maybe you've experienced this or seen this yourself. Probably providers have seen this. So this is [clears throat] caused by a few different things um, in this in our population today. One is the liver itself promotes a lot of the health for the whole body. It's amazing what the liver supports in the entire body. The sun actually, so the sun thins the skin in this level called the dermis, which is right underneath the top layer. And this dermis kind of makes it plump and it's like a shock absorber and without it, as the sun thins this, you're more likely to have skin tears and easy bruising even with incidental contact. So then lastly, the exposure to steroids, topical steroids, nasal steroids, um, inhaled steroids, oral steroids. I've seen people using a lot of these different types of steroids and all different modalities and then yes, their skin may be prematurely prone to this. So these are the different factors. It's tricky. Um, you know, [clears throat] so in other words, trying to preserve the liver, improve the sun protection, reduce the reliance on steroids would all be ways to do it. How can we treat this? This is very complicated and not very good answers. I have seen the skin rally like it becomes better, not not often you see this in life, but if we are able to improve those factors to some degree, the skin will rally. So, first step, sun protection. Sunscreen, sun protective clothing. The skin can rally. There's also something if this may be something you all want to take a note on. There's something called Amlactin. It has something called an alpha hydroxy acid. In a very, not very um, like widely known study, it was combined with they did a B study where they had some people use steroids, albeit topically, and then they had them use Amlactin, and then another group did just the steroid, and then after a skin biopsy, the group that was using the Amlactin with the steroid did not have any skin thinning. It reduced this skin thinning phenomenon. So when we have patients that are prone to this, we have them moisturize with this Amlactin. Anecdotally, it does seem to help certainly for so I'm talking about oral steroids. Certainly it does help with the topical steroids too. Hopefully that was a decent answer.
I had a question with regards to sunscreen. You mentioned that zinc was a good option for sunscreen. I am severely allergic to zinc. I can have like 0%. Which is hard to find in today with your minimal minerals, your vitamins and everything else. What about sunscreen? Is there a good one that doesn't have zinc in it?
Like a chemical sunscreen?
Yes.
Okay. Yeah. So, um, [clears throat] there there are a lot of different I think the answer for you would be, um, there's a lot of different sunscreens and how we generally will choose them is we'll with a price point, maybe we'll use something like the Consumer Reports to kind of guide us and give you some different options. Sometimes we'll take into account the skin type of a person, you know, their skin of color status. Um, I do like the Eucerin and CeraVe brands for sunscreens, not just because they're widely available. I do find them to be effective. Um, I do think it's rather interesting, too, that um, some of the sunscreens that Consumer Reports have recommended can just be simple as like Banana Boat, if you don't mind how that feels. That was one year, one of the top sunscreens in terms of its cosmetic elegance as well as how well it protected. Um, for our skin of color patients, Black Girl Sunscreen is sold at Target. It's a black-owned company. It has very few preservatives and it's a chemical sunscreen. Again, very high in the Consumer Reports in terms of effectiveness. $13 to $15. Uh, my children have used that sunscreen. So that is also a good sunscreen if you want to use. So Cave in terms of brands, CeraVe, Eucerin. You're welcome to try something like a Banana Boat too if you don't mind how it it feels. You know, if it did maybe too greasy for some people, maybe it'd be fine for you. Black Girl Sunscreen.
Thank you.
Yeah, I'm going to move back to fatigue just a little bit. And this is for Nadia, but we may also hear from Dr. Go given her expertise as well. So the online question is how important is it that you push yourself to walk when feeling fatigue? Uh, this person online says I'm from the school of no pain, no gain. Can I just say we hear this a lot. Is that right? And also the idea that AIH patients are very driven individuals. So again.
I think I mean we know that so many studies have shown the benefits of walking. You know, it doesn't have to be the most intense, the most um aerobic, the most um, you know, heavy heavy weightlifting, etc. type of activity. Um, there's so many different benefits of walking, you know, brisk walking, walking at a steady pace. I think what Dr. Lambert and I always emphasize is yes, incredibly motivated group. Um, but start slow. Um, you know, just starting slow and looking at, you know, the where you talk about planning your day around your energy and your fatigue, looking at where during that day you're able to fit in even 10, 15 minutes. Um, you know, I I think it helps helps helps with a lot of things, not only the physical but the mental as well, just helping calm things down, maybe like a walk after dinner time. Um, studies have also shown that just 10 minutes of walking and I can't quote the exact study, I'm sorry. Um, but just 10 minutes of walking after each meal greatly helps with digestion, greatly helps with cardiovascular health, greatly helps with um metabolic health. Um, so, you know, whatever you can do, whatever you can try to fit in, I don't think it has to be um when you're starting it's just slow. Whatever you can try to fit into your schedule. I completely agree. I think movement is important. Um, uh, for for my patients that are on steroids, I will highly, highly, highly recommend walking after meals mainly because the blood sugar increase that happens when on steroids is postprandial, meaning happens most commonly right after you eat. So walking can really improve that blood sugar control as well. So especially on steroids, very important to be walking a little bit every day. Um, if fatigue is is very disabling and if walking is a challenge, then other forms of movement should be considered as well. So yoga, some sort of aerobic exercise, a little light resistance weights, whatever it might be, but some sort of movement should should still be you know, attempted. I think having a routine. So, the the best you're able to predict your schedule, similar to what Nadia was mentioning, if you know during the daytime when you're going to potentially have the energy to do something, build it into your daily routine. And I think the more you're able to do that, you'll gradually be able to increase the capacity or hopefully be able to increase the capacity with time.
Yeah. So, I think that's really great. My my two cents will be that I preach a lot is grace. So grace with yourself, grace with your body, and realizing that you are going to have some really great days, but you're going to have some really sucky days, too. And so what Dr. Go had spoke about doing it when you feel up for it. And again, having that capacity to understand and awareness that if I push myself, I know I've just busted my whole weekend. Also realizing that if you're out all weekend with your grandkids, Monday, Tuesday, plan according. This is about coping strategies as well. And in line with that, someone had raised their hand about a diary. Who does a diary? Does anybody track symptoms with a diary? Margie, can you share a little bit about what and why and how it's impacted?
Um, I started a diary with the very first elevated liver enzymes just to try and put things into perspective. Um, it also helps a lot when I'm talking to my hepatologist because I've got all the data right there and can refer back. Sometimes I talk about how I'm feeling about things. Sometimes I've I've read a lot of studies. I'll take notes on that. So, it's sort of and it's green because, you know, bile. Um, so it's just really helped to um keep me grounded, I guess, and feel like I have some control and that I can um, you know, move on each day. And I think, you know, sometimes I give myself hints. Sometimes I um will will write about, you know, what a great job I'm doing with this or, you know, how terrific my husband's been or, you know, the biopsy results. So, it's all in there and it's, you know, it's hard to read and it's all mishmashed, but it's it's life with AIH. Yeah.
That's really helpful. Um, does anybody else bring a binder to clinic? I see a lot of hands. So, we were joking earlier. I I call that a binder sign. Um, highly predictive of your diagnosis of AIH if you don't have one. So.
Yeah, I was hesitant to share when you asked about like tips for fatigue at the beginning because this might sound silly. I was afraid it probably still will sound silly, but anyway. Um, I have a dog. I think a lot of us actually do from like sharing when talking with other people, but she is motivation to like get me to take some gentle walks a couple times a day. And I also taught her when she was a puppy um with both hands, I'll kind of tap on my chest like that and lay down and she'll come and be like a weighted puppy grounding blanket. So, I think that kind of spans both like mental health and helps with fatigue and that like if I'm anxious, like that's going to make me even more tired. Um, so sometimes I'll ask her to come and then she'll just like lay down on me and be like, "Okay, you're doing nothing except being grounded and petting me and relaxing." But it's gotten to the point where she'll actually sometimes come over and paw me like, "You need to lay down. I'm going to lay on you." So, I know there's a high bar for like a service dog, but in some ways she's kind of like almost to that to me. No, sometimes simple's better. And it reminds me of a story of a patient from about four or five years ago. We were talking about sleep. And it turns out she has some giant dog that sleeps in the bed with her every night. And she always talked about her being hot overnight and being a challenge was sleep. When we move the dog out of the bedroom, suddenly the sleep improves. So sometimes just very simple changes. That's right. On that note too is the caregiver that sleeps right next to the patient. So again, mostly females in terms of the men that come into my clinic sometimes have [snorts] uh snoring problems that also partner impacting sleep. And so just I'll comment on that as a part of the overall approach. Right.
So, I've heard a lot um just anecdotally about people saying that a typical AIH patient is someone who's like female and type A and highly motivated etc etc. From all the experts in the room, I would love to hear more about that. Is that truly a typical patient?
It's me.
I I may have said that.
So, I'm I'm stigmatizing you all and I'm sorry. I apologize. I I Naughty hears me say this all the time. I don't I don't meet any slouches, but I'm also first to tell you that I have a very highly select practice of challenging patients that are willing to go the distance to try to figure out some input for their disease. So, I'll be interested to hear what Aparna says. But yes, I see patients that are proactive, career-oriented, professional. They collect their data, they store it, they bring their binders, they want to talk about data. And I love that because again, it's it's a physician's dream that wants to work with patients. Now, I don't know if that means this is genetically determined or if this migrates alongside the AIH risk alleles and the genetic component of this or is it more that your personality puts you at risk for this disease? I don't know the answer. Um, but again, we should celebrate you. However, I also when I say that to patients and I say, you know, I typically see this, usually I look over and their husband is sitting there shaking their head. Yes. And they suddenly think that I'm some kind of uh I don't know. I I I can see the future. But but again, it's just a pattern I've recognized. I don't know. Apart, do you see this?
Um, I think that my practice is probably a bit 50/50. Um, I definitely I'm in the Bay Area, so you know, we're we're surrounded by younger, very very educated, techy people, so data means a lot to them. Um, so I definitely have a group of people that bring Excel sheets and line graphs and everything to to visits to look at their trends and want values that are, you know, 0.2 of normal and will try to push themselves to get there. But then I also see patients that are from um, you know, central California that that commute up to where I am that have pretty poor access to care and lower health literacy and just understanding what their liver is. It takes several visits to even get there. So um I think it it I've seen the spectrum of things. I agree with Craig. It's hard. I don't know. Um, you know, we we we do have more data in terms of like higher altitudes and northern California Europeans being potentially more affected with autoimmune hepatitis compared to Asian populations. So there there might be some predeterminance that um, you know, sort of go hand in hand with with other demographic characteristics, but I think that's hard to tease apart.
Just while we're on the topic of maybe risk, does anybody ask their doctor what they should do for their kids in this disease? Nadi, how would you educate someone that asks, "Is my my daughter or my son at risk for autoimmune hepatitis?"
I'm gonna throw that question right back to you, Dr. Lambert. [laughter]
Well, I'm going to throw it to Dr. Gold. No. So, I.
So, specifically, there are some autoimmune diseases that we see a significant increase, right? So, like in PBC, the sister disease, mother-daughter transmission is actually a little bit higher than you think, you know, in anywhere between 5 and 10%. In AIH, this is actually not incredibly studied or well studied, but there's a good population uh data set that looks overseas and and really the genetic risk in terms of risk of giving it to offspring is incredibly low. We're talking like less than one in 10,000. So, this is reassuring, but again, much like the AIH patients I see are wired, I think a a a conservative approach is just making sure your kids are getting liver tests and when they're ready for routine screening, those pieces as well. Um, because one thing that I think is really clear and everybody here probably has someone in their family that has some autoimmune disease. I hear it time and time again. Now that's not I not that I don't hear patients with nobody else and those are the quote unquote lucky ones. Um, but again, I think it's a part of the overall routine maintenance surveillance monitoring you would do with any family with autoimmunity as well. Apart, anything else to add?
I no I don't have anything else to add and I think I I mentioned this yesterday. We do see autoimmunity run in families, but not necessarily autoimmune hepatitis. So there there is no genetic testing to do. So there's not you can't really ask providers to do that. The best that the most I recommend is just routine. Make sure that your kids know that you have an autoimmune condition so that when they are going to their doctors and their doctors are asking for a family history, that that they provide that family history and just just advise them to have their liver test checked with their primary physicians once a year.
So there was an online question about red light therapy. Sahand question about safety and and use and again for what disorders diseases.
Okay um so red light therapy in general as a a modality I you're seeing it everywhere not just social media we see this to treat acne I think people are saying this for rejuvenation for hair there's a lot of different things that is out there for it so if people are not aware that's what they're talking about it's not a laser it's literally just the the color red. [clears throat] So um so this is being start uh this is being tested for a lot of different things. The one that's the most studied is actually for hair and um hair loss. There's actually a device on the market that is a helmet and it just emits red light. Some men are shaking their head. I'm not going to out you. Um, [clears throat] and so it's out there. You can you can buy it. So I'll tell you what, as a man who is losing his hair, I'm very interested in this. There's treatments for it. Um, but but this is what I tell my patients. If this thing worked, Jeff Bezos would have a full head of hair. Save your money. Save your money. So just [clears throat] because this thing is exists doesn't mean it works. The same thing for the acne. Now, um, there are some studies that red light therapy can help with modulating the immune response to bacteria, to the way the immune cells work. They're only done so far in very basic clinical studies. This is before even a phase one study. So, in other words, the marketing has exceeded the science. What I tell my patients is save your money. Yes, I wish there was a panacea, but it hasn't worked on a clinical scale the way we would have wanted it to in other diseases for the last 20 years.
Yeah, that's a really good point. Hey, Aparna, the question online says, I I take Adderall as an adult and during the work week, I feel like it may mask my fatigue. Could that be bad?
No. No. If it treats your fatigue, that should be okay. I think as long as you're being monitored on the Adderall, I think it's reasonable. Perhaps that was part of the reason why you were feeling fatigued. So this is part of evaluating what the ide what the cause of fatigue might be and looking at how multifactorial it is. So addressing the different components of the individual you that could be affected and be causing fatigue is is the absolute right thing to be doing. So don't stop it if it's helping you and if it's safe to use.
And Nadia, is there anything that we shouldn't do with exercise that could exacerbate fatigue or may maybe it's more of a question about safety and maybe you could speak more about resistance training or aerobic exercise?
I think I think talk to your doctor. Absolutely. But I think that what Dr. Lambert said about giving yourself grace. Um, I think if it's not something that's a part of your typical routine, I think I think if it's something where you're just starting out, take it slow. Um, so same thing with resistance training, lifting weights, start it slow, start with lighter weights. Um, you know, maybe consider joining a class um at the Y or so you have people around you getting advice from a trainer. Um, so I think, you know, you don't want to overexert yourself because, you know, we've talked about um with that worsening stress which can make you then feel worse, feel, you know, contribute to the muscle weakness and fatigue. So, I think just taking it slow, um maybe getting some advice, getting some help from people at the gym, professionals, caregivers. Um, but starting slow, I think is best.
Dr. Gold, do you advocate for resistance training for muscle mass and anything that you know in terms of impact on overall function, fatigue?
I advocate for um, you know, increasing muscle mass especially for our patients that have osteopenia, bone disease, osteopenia, osteoporosis, and definitely if they have more advanced liver disease, so if they have cirrhosis. I think that making sure that you maintain muscle mass is incredibly important. I think otherwise, I don't feel strongly about which mode of exercise movement modality um my patients perform. I think as long as it's something that they enjoy and that makes them feel better and that helps their fatigue out.
Sahan, Nadia, thank you so much. We really appreciate it. Thank you all.