Transcription
We know that this is a challenging topic, and I know that many of you even mentioned to me, "I can't wait to hear about the fatigue talk." I, I think I'll preface this. Fatigue is heterogeneous. It's challenging, but it's an active, open discussion. So, we'll just leave it at that and hear what Nadia has to say about running on coffee and corticosteroids. Thanks, Nadia.
Hello. I'm Nadia. Um, so I'm a PA here at IU. I have the privilege of working with Dr. Lambert. Um, so I will be talking about fatigue today. It's a lot of pressure because I've heard the word fatigue like a hundred times um in the last day and a half, but I hope just to kind of give you guys some tools today.
So, I know typically when people think about AIH, they're talking to you about liver numbers, immunosuppressants, biopsies, but we know fatigue is one of the most common symptoms in AIH. We know it's also one of the most overlooked, underdressed, and we know it affects quality of life negatively. Um, so I hope to be able to just give you some tools coming out of this today to not only help you but also help your providers um to to just kind of talk to you more about managing this in a much more meaningful way. I'm also going to speak fast because I only have 20 minutes, which doesn't seem doable, but okay.
Um, so let's talk about fatigue. We'll talk about how it affects patients with AIH. Um, how it compares in patients with AIH, other chronic conditions. Biggest thing is, I just want to give you guys an approach. What can we do? What can we ask our providers to help us um, other providers who are not as familiar, and how to have them better manage your fatigue and to just talk about some therapies.
So, fatigue, we know, most common symptom in chronic liver disease, but also multiple chronic medical conditions. You know, we're talking about heart disease, diabetes, lupus, RA, so many different medical conditions, and again, still not very commonly addressed. Um, absolutely affects quality of life, productivity, mental health, which we've talked a lot about this morning. And, you know, I will talk more about what my patients say to me, but it is, I'm sure you all know, it's a lot more than just saying, "Oh, I just woke up tired or I'm tired."
So, some common uh characteristics. Yes, absolutely persistent tiredness, but very often it's not relieved by just taking a nap or just resting. Um, we'll talk more about the physical, mental, emotional components of it, reduced motivation, absolutely how it'll impact your day-to-day quality of life and your typical tasks. Um, so how we know a lot more about fatigue and its effect on quality of life is actually through all of you. um, and through a study um done via AIHA about a couple years ago. So, um, paper that was published about how AIH absolutely negatively impacts many facets of life with fatigue being um one of these domains um in this quality of life component. Participants suggested that AIH research should center not only on finding a cure but on management of symptoms that dramatically reduce the quality um of their lives. And, you know, with guidelines so far, so with AASLD guidelines, oh, I'm jumping the gun, never mind, I'll get there.
Um, so let's actually talk about another uh single center study first. So, this is a study that was done in 2019. So, just talking about some stats first. AIH absolutely, absolutely one of, or fatigue, one of the most common reported symptoms in AIH. Um, absolutely will can and will still occur if liver tests are completely normal, if that IGG is normal, and like I said, it's incredibly underrecognized and underdressed. So, there was a study done in 2019 which showed that 98% of all patient patients with autoimmune liver disease report fatigue. 59% say it's the most debilitating symptom, and even through the questionnaire we just saw with Dr. from Ontario, I mean, that's a staggering amount. Um, 87% does have discussed it with their providers, but of these, only 59% feel like they've been suggested any sort of treatment or guide for therapy.
This is kind of what I was speaking about with a lot of the things that my patients will say to me in clinic. Some of these also from that AIHA paper, but, you know, a lot of these honestly I heard yesterday as well during our think tank. Um, "I feel like my body's battery never fully recharges. I push through for my family, but at the end of the day, I'm so tired that I feel like I can't enjoy my time with them." Um, "You feel often guilty because you feel like you're not there to do a lot of the activities that you used to be able to do." You know, "Do things with your social circle." Um, "Kind of running on empty, and it's the symptom that you suffer with all the time, but people don't really see." Um, and "Planning your life, planning your day-to-day plans around your fatigue is something I heard a lot about as well."
So, again, just kind of reiterating that, you know, it can reduce your ability to do your typical day-to-day tasks, um, impair your work functioning, social functioning, inhibit your um, you know, ability to properly evaluate, um, even things like taking risks, um, storing new information, um, almost people will say, "Well, I feel like I'm losing my memory. I have memory loss." Um, muscle weakness, physically not being able to do the same things. Absolutely think about that mental component, depression, anxiety, feeling lonely, feeling isolated. Um.
So, this kind of touches on what I was saying earlier. You know, there are absolutely no clear guidelines for treatment of fatigue and the AASLD guidelines from 2019. Yes, we talk about therapy, treatment, induction, maintenance of immunosuppressants. We also talk about lab monitoring, but does anybody talk about these extrahepatic symptoms? Does anybody talk about fatigue? Does anybody talk about sleep? Does anybody talk about anxiety, depression? Um, and I would think to say that the, a lot of these are not often addressed when you go see your provider either.
Um, so how to measure? I know that in my clinic, Dr. Lambert as well, we absolutely ask patients about fatigue. Um, can you guys, do you mind raising your hands if when you do go see your providers, if fatigue is something that not you bring up, but is this something that's asked about of you? Okay, that, that's not that many. Um, so it's important to bring this up, and I, I wish it was more hands that had gone up, but one of the things that I want to try implementing a lot more in my clinic as well, and this is a tool that I want you guys as patients um to use, are these scores, which people really don't know about. I didn't know about a lot of these either till I was researching more. But one is the modified fatigue impact scale. Um, so you can just Google this. There's um, a 20-question version, and then there's a shortened version which is five questions. Um, but it focuses on physical, cognitive, psychosocial factors and how fatigue impacts these. Um, the 2019 study that I mentioned earlier, it showed that AIH patients, you can see much higher scores compared to the control. Um, another one is the fatigue assessment scale. This is a 10-question um study or questionnaire, but what it's asking is about physical and mental symptoms in the setting of your chronic disease. And with this, I wonder if you were able to fill this out, take it to your provider, is this something that would open up more of a conversation?
So, talking about providers, who is managing? Um, Dr. Dr. Lambert and I, I know highly address. I feel like this has been addressed throughout this entire conference. He's had, you know, multiple um, different providers from multiple fields talk, but it is a very multidisciplinary approach. Um, so we like to focus on that as well. Um, nutrition, psychology, um, sleep medicine, rheumatology, primary care, we do all have to come together to help treat the patient as a whole. Dermatology, like it's very multidisciplinary. Um, and there's a lot of other causes of chronic fatigue as well. Um, so we're thinking about inflammatory processes, and I'll talk more about how to talk to your provider about these and what we as providers should address when it comes to this as well. But, you know, things to often think about that could be contributing to your chronic fatigue, too. It may not just all be the AIH. So, why not think about other things that could help your fatigue and help your quality of life that we may be missing here? Um, thyroid disease, anemia, um, sleep disturbances, anxiety, depression, nutritional deficiencies, lack of exercise, um, hormonal imbalances. We heard a lot more about that. I know that's not something that I have really addressed in clinic, but I will now. Um, anxiety, depression, stress, and also medications. Um, you know, you may be on medications that could be contributing to possibly a lower heart rate, you know, lower blood pressure, fatigue. So, just could be so many different things.
And so, how do we manage this? So, this is kind of the bulk of what I would like to talk about today. Um, I came about, I came up with kind of an approach from a patient perspective and then a provider perspective, and I hate to put this on you guys, but, you know, that's why you're here because you are advocates for yourself. You're here to learn more. You're here to be able to go back and whether if it's with your support system, your caregivers, other providers, um, your GI provider, hepatology provider, to be able to educate. Um, and that's what this group is so wonderful at doing. So, some things I want you guys to do. Um, and then some things that providers need to be a lot better, including myself, at focusing on um, with our AIH patients as well.
So, number one thing I would like for you guys to focus on, if possible, would be starting a journal or a diary. How many of you keep one now? Okay. Okay. So, a couple people. Um, so a big coping strategy in this journal, in this diary, or whether it's your phone or whatever it is, self-assessment is absolutely major. So, think about your fatigue. When did this fatigue start? What times during the day do I feel a lot more fatigued? How severe is my fatigue during these times during the day? Is it a one? Is it a 10? It's incredibly severe. Um, how you guys talked about, you know, planning your life around your fatigue. So, how are you able to during the day do certain tasks? How are you feeling at your job? Um, what times during the day do you feel like, "Okay, maybe I have a little bit more to give?" What are you eating? Are you starting your day with coffee, but is it full of sugary creamer? Do we think that I know I do um, do we think that these things are kind of giving us an an insulin spike and then bringing us down and we're crashing? Um, what kind of nutrients could we kind of point out if we see what we're kind of eating and drinking throughout the day? What can we look at and think, "Okay, possibly am I getting a little bit more of this? Am I definitely not getting enough of this? Am I getting enough protein in my diet to give me enough energy throughout the day?"
So, these are things that, you know, often, yes, as a provider, we try to do a pretty comprehensive history, but sometimes we don't always have all of the time um to ask you about all the things. So, with you being the awesome advocates for yourself that you are, going in and saying, "Hey, I logged this. I noted this. Can we please talk about this? I do think that will make a difference." Um, and also using those scales, going in and saying, "Hey, I took this modified scale. My score on this um shortened modified scale is like a 15 out of 20. What do we do about this?" Um, you know, it's just asking, not only asking, but advocating for that change and, you know, standing up for yourselves.
Sleep is major as well. Um, so I want you all, we've talked about this word, you know, sleep hygiene. Do we really put our phone not right next to us on our nightstands when we're sleeping, even though we know they're still, you know, light emitting? Are we just kind of doom scrolling on TikTok? Because I know I have two toddlers, and at the end of the day, I just want to sit in bed and look at Instagram. So, but is that the last thing that we're doing before we go to bed at night? You know, are we watching what are we watching on TV? Do we have room in our daily schedule to before bed just take 10 minutes to meditate? Can we open the Calm app? um, you know, what can you do to kind of shut your brain off so you're not just thinking about all of the stressors of your day and the anxiety? Um, so these are all things, and yes, again, it's asking more of you, but it can make a difference.
So, thinking about diet, thinking about exercise. Is there time during the day you can literally just go on a 10-minute walk? Can you take your caregiver with you? Can you take a support system? Can you join a walking group? Can you join an activity that you'd like? Pickleball is really big right now. Um, so, you know, just different things to think about. What do you think that you can do during your day? What can you add in your plan of your daily life around your fatigue that would possibly benefit the fatigue? So, going in, talking to your provider, having a list of all of these things, you're opening up that conversation.
From a provider standpoint, absolutely, we should be doing a very comprehensive history. We should be doing a good physical exam. So, even looking at things like hair, skin, nails, um, we should absolutely be evaluating for lab further lab testing. So, I talked about those different causes of chronic fatigue. I know for myself, when my patients mention fatigue, I'm doing more of a metabolic workup. I'm checking vitamin D, folate, vitamin B12, thyroid, iron profile, ferritin, um, I will check an A1C. Do you have other cardio-metabolic risk factors? So, it has to be all-encompassing. Um, and possibly you may go in and your provider may not mention that, but you're the patient. You know, say, "Hey, you know, family history of diabetes. I've had some weight gain. I also think I have some fatty liver. Can we check this A1C?" So, it could be different things. Um, talk about your sleep. This is what I've noted. This is what I've journaled. My partner says I'm waking up at night um, you know, kind of grasping for air. I'm in, I'm snoring way too loud. Like, my kids complain about it. Um, do you need a sleep study? Is there an underlying sleep apnea that's not being treated? Um, do you have insomnia? Do you have restless leg syndrome? These are things that there is therapy for. So, why suffer? Um, insomnia, that is something that I address, but I know it's different for providers. I often prescribe medication for it. Restless leg, that there, there is therapy. Um, are you a patient on water pills? Do you have swelling in your legs? Are the water pills causing cramping in your legs? So, these are all things that could be addressed to help you sleep better and hopefully help with your fatigue.
Mental health, that is huge. That is incredibly underaddressed in the world that we live in. So, you know, Dr. Montero speaking about it is wonderful, but talking to your primary care more about it. You know, there are SC um, scoring questionnaires, there are is screening like the PHQ9 that she mentioned um, and there are medications, there's treatment available. Um, and then lastly, empathy from your provider. It's, it's major. Um, you know, I always tell my patients, "If I don't know how to help you, I will get you where you need to go." Um, you know, if it's something like restless leg or something like, I will get you where you need to go. So, having that relationship, and again, I hate to put it back on you, but helping your provider understand if they're not as familiar with it. Um, and maybe they can get you where you need to go and get you to the right provider in that multidisciplinary approach. um, and help you out more.
So, with that, just a couple supportive studies really quickly. So, there was a study in 2023 which showed um nutritional deficiencies, especially we're thinking about vitamin D, zinc, iron. These absolutely can worsen the impact of fatigue in patients. Um, and then we're also looking at a study from 2018. This was specifically in women with MS, but aerobic exercise greatly helped um with a positive impact on their fatigue. So, finding things that you like. Water aerobics. I know I actually have quite a few patients that enjoy it. Um, and this is just another one. So, this looked at patients with long COVID. Study from 2021, I believe. But we often hear about fatigue um in patients with long COVID. So, not so much um, a data endpoint, but looked more so also at an individualized approach for patients. If this is something where, you know, we're talking about individualized therapy, how are you conserving energy? What does your diet look like? What is your sleep? Are there underlying mental disorders? Can we possibly create a care pathway and think about all of these things to better your fatigue?
And then AIH, right? That's what we're talking about. So, um, with AIH, absolutely, we want to help monitor, decrease that inflammation. I'll be honest, even if my patients have low to normal ALT, AST, I will often use other markers. Even if it's a mildly elevated IGG, a mildly elevated total protein. Look at the metabolites like we talked about yesterday with that TGN, if it's not where I want it to be, and the patients patients complaining about more extrahepatic symptoms, especially fatigue, I will still alter therapy to get better disease control and help with those symptoms. So, you know, I don't just look at the numbers. We have to look at the patient as a whole. Think about side effects. Has this patient been on prednisone forever? Is that causing sleep disturbances? And then also, if there's more advanced fibrosis disease, are we looking at cirrhosis? So, is there volume overload that we need to help control? Thinking about the diuretics as well. Is that causing cramping at night of the legs? Encephalopathy, is that uncontrolled high ammonia levels in patients which can which can cause sleep disturbances? And then bleeding, anemia, things like that.
So, last bit of it, we'll talk about some medical therapies. Um, so trial studies for a fatigue in AIH, absolutely none until now. And we actually have all of you to thank for that. So, um, AIHA, thank you, you know, thank you to all of you for helping fund this study, but we are actually looking at the Mediterranean diet in AIH um as a possible non-pharmacological therapy to help with the improvement of fatigue. Um, so I believe Dr. Dr. Lambert, we're about halfway through data collection. But um, primary endpoint, so speaking about another fatigue um scale on a survey called the PROMIS 29. I didn't talk about this earlier, but primary endpoint is to show that in patients with AIH, with one group being on a more of a Western standard diet, another group being on more of a Mediterranean style diet, are we able to see a decrease on that score, a decrease in that fatigue score on the PROMIS 29 scale in patients who are on the non-inflammatory Mediterranean diet versus patients on a standard Western diet. Um, so other things we are looking at, absolutely changes in your lab markers, liver tests, um, some inflammatory markers as well, IGG, CRP, iron test, ferritin, um, looking at your stool microbiome, changes in the FibroScan too to see the levels of steatosis, fibrosis, but um, you know, we hope to learn about a lot more about this and hopefully have this as a non-pharmacological treatment for fatigue and AIH.
[snorts] Um, other things to consider. So, just quickly talking about a few other things. In patients with PBC, primary biliary cholangitis, I have tried modafinil. Um, so again, you know, talk to your um, hepatologist, GI physicians, but I have previously tried modafinil um for fatigue. That's actually typically used for narcolepsy, excessive sleepiness, but have tried it in a few patients to see if it'll help with fatigue. Pentoxifylline is being researched in patients with fatty liver for its anti-inflammatory effects to see if that'll help more with fatigue as well. In palliative care and um, I know in our hepatology group, we work with palliative very closely as well, but some other drugs that are typically used. Dichloroacetate is typically used for cancer-related fatigue. Amantadine to see it has more um effects in kind of decreasing that oxidative stress. And then alternative strategies. We know that black coffee will help reduce fat and inflammation in the liver. Um, but also what about helping with um, the fatigue component of it all? Cannabinoids, I feel like we definitely need more research. It is not something that I typically recommend in day-to-day practice. Um, but there's more studies being done um about the benefits when it comes to sleep, fatigue, pain, etc. SAMe, CoQ10, alpha-lipoic acid. Again, looking at uh with some of these increasing dopamine in the brain, decreasing inflammatory effects, but also seeing what are the possible strategies in the future that could help impact um fatigue in a more meaningful way.
So, I think, you know, it comes down to, do I have one drug? Am I running low on time? Okay. Um, do I have one drug today that I can recommend that's going to help with your fatigue and cure it all? No. I wish. But I really hope that with these strategies and educating you guys, especially knowing that you are just such wonderful um, you're wonderful at advocating for your own health. I'm hopeful that this helps educate people more about their fatigue, but especially in this in the setting of AIH, encourages more of that self-monitoring, self-assessment, um, and gets those caregivers involved, gets groups, people in groups like these involved, the community, um, and makes you more comfortable at bringing up these things with your providers if it hasn't been discussed before.
This is from a symposium review at EASL um, European Association um, for the Study of Liver Disease last from last summer. Um, but I thought this was interesting. This was more targeted uh regarding a study for PBC patients. But um, it stated, "At this moment, we do not have a pharmacological treatment that will improve fatigue. That doesn't mean that we can't help our patients in particular. We can help them to understand the symptoms and to live the best life that they can. It's about helping people to cope." Um, and so I hope, I really hope that we can, you know, take some of these strategies and help you guys cope better um, with this symptom that we know is so incredibly um, you know, you are burdened with, but it's underdressed and um, not managed as well as it should have, especially with something that has such a tremendous decline on quality of life. Um, so just thinking about it, you know, thinking about other underlying chronic medical conditions, thinking about it as more of a multidisciplinary approach, bringing up these certain things when it comes to your self-assessment, when it comes to some other underlying diseases with your provider, um, thinking about it as much more of an individualized, comprehensive approach, um, talking about how it impacts your life. You know, it shouldn't be where you go in and fatigue is just, "Oh, it's just a part of your AIH. It's just a part of your disease. It's just a part of any of your chronic medical conditions," but why should it be okay for you to just live with that fatigue day in and day out as it is? Um, so, you know, talk to your other um, caregivers, talk to support, uh, more discussion in groups such as these, education, empathy. Hopefully, these are the keys to better management moving forward. Yeah. Thank you.
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