[00:00:00] @Intro: Welcome to AiArthritis Voices 360, the podcast

solving today's most pressing issues in the AiArthritis community. We

invite you all to the table where together we face the daily challenges of

autoimmune and autoinflammatory arthritis. Join our fellow patient

cohosts as they lead discussions in the patient community, as well as

consult with stakeholders worldwide to solve the problems that matter

most, whether you are a loved one, a professional working in the field, or

a person diagnosed with an AiArthritis disease, this podcast is for you.

So pull up a chair and take a seat at the table.

[00:00:44] Tiffany: Hello, welcome to AiArthritis. Voice is 360. This is the

official talk show for the International Foundation for Autoimmune and

Autoinflammatory Arthritis, or AiArthritis for short.

My name is Tiffany Westridge Robertson. I am the CEO and original

founder of the organization. Also a person living with AiArthritis

diseases, primarily non-radiographic axial spondyloarthritis, and I am

very, very excited to bring to you this month's episode of our talk show,

which features one of our most popular programs we have at AiArthritis,

and that is our Go With Us to Conferences program.

In this case, it is EULAR 2024, the European Rheumatology Research

Conference. And EULAR is for the European Alliance of Associations for

Rheumatology. We are super, super, super excited to bring you some

highlights as this month's episode. As we do every year, twice a year, is

we go to the biggest scientific conferences of the year.

One is EULAR, and that happens in usually June of each year. And then

we also attend the American College of Rheumatology Convergence,

which is in November of each year. So stay tuned for ACR 2024 and

make sure you sign up to go with us virtually of course, can't take

everybody in person, but sign up virtually at AiArthritis.org/conferences.

So let me tell you a little bit about what go with us to conferences

program is all about. So that I can set you up to listen to some of the

clips or watch depending on how you're participating in our talk show

today. This is a program that was created by patients, including myself

and shout out to Deb Constine, who's you're going to hear from on this

episode because she was going with us as a person living with

rheumatology, rheumatoid arthritis.

My goodness, what's happening to my tongue today, rheumatoid

arthritis. And she is also a retired dietitian. And she's a co founder of this program. So she's been building this with me alongside in 2020. And

then since we brought on other staff, they have also been helping

develop and build this program.

So essentially the initial idea was we are going and learning all of this

amazing material this amazing information and we need to share it with

our community because it is not just about the research going on. The

information we're learning about treatments about health management,

disease management so relevant to our journeys. The issue is really,

these are conferences primarily with the audience being rheumatologist

and researchers now, at EULAR which is this one, it is a little unique

because they actually have a patient track at ACR they do not. But either

way, it is important we felt for patients to really understand and be able

to learn with us. And so we developed this program in order not just to

reiterate back what we're learning, but really have conversations, really

talk to each other, talk to you and help you understand how you can

relate this to communications with your doctors, to your own disease

management journey.

Because we do learn about pharmaceutical therapies and research and

different treatments, which you'll hear a snippet about today, but we also

learn about symptom control and you'll hear a little bit about brain fog

and fatigue. So those are the kind of things we're learning. And of

course, that's interesting, right?

And things that you want to learn as well. So this is, you're going to hear

today three of the debriefs that we did, or I'm sorry, four of the debriefs,

my goodness, that we did from EULAR 2024 from those patient leaders

who were going with us. So from myself, you will hear about CAR-T.

That is a new therapy that takes our own blood, our own metabolic

structure of our own bodies. We, we take the blood that goes into a lab,

it gets mixed up, it comes back and infused into your body and as a

result, you are healing yourself. It is a very novel process and it is

happening largely in the lupus community and also in a few other of our

diseases. So I will be doing a high level update on that, and then we'll

also have Deb reporting back to you on patient tailored pain

management.

Leila is going to be talking about what she learned about brain fog. And

then Becky is going to talk about the opioids and fatigue so she's going

to be talking about that. So you can see that there's quite a variety

again, you can learn more and sign up to go with us at AiArthritis.org/conferences and I'm going to turn it over to Ryan, our

producer to piece this together and let you witness some, a little taste of

what happens when you go with us to, in this case, EULAR 2024. First

up, we'll start with my debrief, which is on CAR-T. And here we go.

Hello, everybody. I'm excited to report on some sessions from EULAR

2024, specifically regarding precision medicine or the science of taking

our unique, signatures, molecular signatures from our blood, urine, and

zeroing in on things like genetics, DNA, et cetera.

And we've been focusing on this for a few years now at these

rheumatology conferences and how by doing so we can expedite

diagnosis. And we can also match treatments to people depending on

what might work better or worse for different subgroups. An

advancement, CAR-T, C A R dash T. You may have heard of it.

It's something that's been used in the cancer space for about a last

decade. And it has recently moved into the rheumatology space very

early. It's not something that you could get in your office, even close to

getting in there in the near future. But this is important and this is why we

go and we learn and we see what the potential is out there.

So this is very exciting. The CAR-T, which is essentially they go in, they

pull out, in this case, T cells. So T cells from your body, they put them

into a lab, they mix them all up with some other things, they put them

back in your body and then what ends up happening in the studies, we

had one lupus patient, then six lupus patients.

And what ended up happening is with that one dose, all went into

remission. And not just remission, like what we might think of as

remission, like low disease activity, like, no disease activity completely

off of all medications. And so that happened three years ago. We did

hear about it I think last year at one of the conferences and they gave us

an update and said, the person is still in remission and these were not

people with mild disease.

These are very serious. One needed a kidney transplant. So that just

shows you the power of these. It is a one and done we think, but we

don't know. That's also something important to understand with this

CAR-T therapy it of course can be very expensive. We have no idea. Is

it going to last five years? Is it going to last 10 years?

Is going to last 50 years? We don't know and that's part of what's

happening And the trials is trying to figure out as they follow these

patients who are at it so in saying that I wanted to give you let's see a

very specific i'm going to go into a patient with lupus and heart and lung

disease And treated with this CAR-T with this T cell extraction didn't

know if it was going to work, but they were, this person was so severe

they thought they would give it a try, even though they were completely

depleted of all of their B cells, which, cause they were on rituximab. And

that is one of the biologics that really do strip your immune system. But

even with that she grew all of the B cells back and replenished, went into

remission in 30 days, 100 percent remission, no medications.

So pretty amazing stuff, don't you think? I wanted to let you know too, it's

not just lupus, they're doing these CAR-T studies on myositis,

scleroderma, also known as systemic sclerosis. There's some debate

though. Who's going to get these when they are already, right? What is,

how refractory or refractory means not responding well to many

treatments, so you really are not responding to anything.

What's going to determine that? Who's going to get access to these? So

there is a really big debate there. The other part of that is what diseases,

so we have diseases like rheumatoid arthritis that are, for a lot of

patients can be treated pretty easily, but what about the rest of us?

Would we even be in line?

We don't have RA, but the point is who gets it? And so that's really just a

big discussion. And then to note, though, any existing damage, of

course, can't be repaired. If you have any type of, Things that have

happened because of your RA or because of your lupus or Sjogren's or

anything that cannot be undone but so you do have to consider that as

far as remission goes and then another session that I watched was

specific to Scleroderma or systemic scleritis, but I do want to point out

just because I'm saying that don't tune out.

Don't say oh Not my disease. I don't care. You do care. Let me tell you

what because these studies are make the rest, open the doors for the

rest of us. So understanding and being educated on the possibilities is

something that we all should talk about and learn about. It also ties into

when do we get treated?

So before they started talking about the CAR-T or the precision medicine

in diseases that don't have as many treatments don't have as many as some of the other diseases, they're having to really start to understand

when is the right time to treat. We do know historically. All of our

diseases, we have seen a, a process called treat to target, or working

with a rheumatologist to be on a drug after a certain amount of time not

working so well, we shift, we, and that is a treat to target.

We know that works. We have seen research presented to us in the last

several years, showing those who are treated early with the right

treatment have better outcomes actually can achieve a remission. It's it's

an actual word that we're actually seeing but it all it always involves that

early intervention.

So that is obviously something that they're targeting here but they also

need to understand is they're developing treatments and developing

treatments that are precise whether it's CAR-T or simply targeting

certain molecules or different signatures so that they can see what's

working best, they're going back to all of the old research for these

clinical trials for they specifically were doing ectemera.

So they looked through and they said, where are our subgroups?

Because back when these studies went on, they weren't considering

what might respond better in male, female, what might respond better in

a person who has long term disease versus early disease. And so all of

these are subgroups.

What subgroup do you fall into? So these are things that they went back

and they're looking and seeing, did any of these people in this group

respond better or worse? And they did find out that there were some

data that showed early intervention helped with the skin outcomes. And

it also did matter if they had never been treated before and they were

early on, they seemed to respond better to people who had been on

treatments and had the disease longer.

So that's interesting in itself because why did, why does it matter if

you've been on these treatments before versus not? So something

matters, but it's just part of what they're trying to explore and understand.

They also were looking for what they call predictive markers. So this is

something we've been working on in RA, Sjogren's.

Oh my gosh so much in Sjogren's. And I know we're reporting back on,

on that as well, but psoriatic arthritis, spondyloarthritis, there are these

predictive markers that they're starting to figure out. One biologic works better than others. And wow, wouldn't that be amazing if you could just

know, Hey, this is going to work for me.

So that is all in the process right now. And so they are starting to follow

patients in different trials to figure out these subgroups and who might

be responding better than others. Let me see. I'm looking at my notes

here. And there's another one and it did talk about the CAR-T specific in

these patients with scleroderma or systemic sclerosis, and it, they

treated seven patients.

So now we've got enough. These are small studies. So they're starting

very small and eventually they'll get bigger. And we had what a hundred

percent in the ones that I just reported back. In this one it was seven

patients during the three months after they received this infusion of the

CAR-T, the therapy, over 70% of these antibodies that were causing

their diseases dropped, and so they were able to see this improvement

in the skin disease and disease act activity overall just decreased about

30% after 120 days, and their ulcerations decreased within four weeks.

At 400 plus days, so over a year, everyone achieved significant

improvement. I want to point out, though, that they didn't talk about

remission and drug free in this one. I don't know what the difference is

between the lupus patients that had such success and the scleroderma

patients that didn't quite achieve remission.

There was also one patient that their levels kept going back up again, so

they didn't fully respond as well. So we, I don't know why, I don't know if

there was something else, a comorbidity or a multi diagnosis that, that

may have impacted that. I'm not sure they didn't go over that, but it

would be interesting to note.

So wrapping it up. It's just really good to know that all of this type of

research, it's early, but it's happening and they're stretching out to many

diseases and just curious, what are your thoughts about this exciting

new era of treatment? So we're really starting to think about this word

remission.

It's just amazing. So there's my report and more coming here from

EULAR 2024. All right, next up, let's turn it over to Deb Constein. As

mentioned, Deb is one of the co founders and co creators of this Go

With Us to Conferences program. She's a person living with rheumatoid

arthritis, a retired dietician, and a long term volunteer with AiArthritis.

Let's turn it over to Deb to talk about patient tailored pain management.

[00:15:58] Deb: Hi everybody. Deb Constein here, part of our core team

that is attending EULAR 2024. I'm in Madison, Wisconsin, longtime

volunteer of AiArthritis, and I have rheumatoid arthritis for the last 43

years, diagnosed at 13. The session I dug into today, and the reason I'm

looking down is I have lots of notes in front of me.

So just so you know why I'm not picking up all the time. The session I

chose was Patient Tailored Pain Management in RMDs. RMDs are

Rheumatological Musculoskeletal Diseases, are rheumatology type

diseases. And the professor that did this session was Professor Neil

Basu, B A S U, if I'm pronouncing that incorrectly.

He's the Professor of Musculoskeletal Disease in the University of

Glasgow. And one thing that he did focus on was he doesn't blame

patients for their number one priority being pain. So it was ranked pain,

fatigue, valued activities, low mood, mobility, activities of daily living, and

then visible joint damage.

And clearly I have visible joint damage. And this was consistent across

any rheumatological disease. And like psoriatic arthritis, lupus, all of

them are included. He did talk about the impacts of all aspects of patient

life being functional activities, social consequences, the economic

burden, and emotional well being.

So those are all the things that impact patients on a daily basis. And as

we've all seen that they call it the visual VAS. It is the 1 through 10 pain

number system. And it's got like from zero pain and you've got a smiley

face and at 10, they have tears and crying and things like that. He said,

that is not the way we should be looking at pain at this point.

We should be looking at it as an entire multi dimensional disease and

problem. And he talked about mapping out the different areas of the

brain that are affected by pain as well. He delved deep into three areas

of the mechanism descriptors of pain. The number one was nociceptive.

Now that is pain that arises from actual damage or something that

causes tissue issues, and it is like an example of that would be

inflammation in the joint or a broken bone for that matter.

The second one was neuropathic. That is pain that is caused by the

somatic sensory nervous system, and I know I said that kind of butchered a bit, but what that is actually talking about is part of our

sensory system that causes perception of touch, pressure, pain,

temperature, things like that so you understand what that is talking

about.

And that, an example of that would be like vasculitis. It's a, it's a

neuropathic pain disorder. RA would be a nociceptive so that number

one, that was an example of that as well so that inflammation in the joint.

And then the third piece, which he spent a lot of time on, was the

nociplastic, and that is pain that happens from an altered, there's no

clear evidence of there actually is an issue, and I could say that I have a

nociplastic pain sensation right here, but you can see that there's

nothing there.

There's no bruise. There's no evidence of the of a trauma or something

like that and things that they threw into this category was fibromalacia as

well as hypermobility things like that, there's no clear evidence and when

they talked about what to do about this third area, which is the

nociplastic pain, they recommended going to the EULAR

recommendations and you do a lot of education and exercise those

pieces that they thought that tended to have a really good influence on

people's pain in their body. And they also talked about the importance to

treat the symptoms that are related to pain. And so the fatigue, the

anxiety, the depression, all of those things too. They talked about those

can be equally as important as the pain that you're feeling and they said

when the exercise and education, when that is not enough, that you

need to actually start looking at treating all of the things that are

happening alongside of the pain. For some people, they can do it in a

pharmacological way. If you're having sleep disturbances or anxiety,

there's medications you can take. But they talked about the non

pharmacological management. And looking at basically a constant

behavioral therapy, so people talking to you, and that can be even over

the phone talking to a counselor, but that being all the time, as well as

exercise therapy, that can actually be also done, as well as visual care is

what they interpreted into being more the educational that happens.

And let's see, so they a couple other things that I wanted to quickly talk

about was they actually talked about visual, the functional MRI brain

imaging so it can actually look at the oxygenated and deoxygenated

Hemoglobin, so the blood in your brain, and measure it as far as the

activity goes and what's happening.

And, they're actually experimenting. Nothing is out there right now. But

they're really doing some, some research into the functional brain

imaging. And, looking at very specific of the brain. And, looking at that,

they think that certain areas of the brain are talking to each other. And

they're looking at the focus on that.

So there was something called at the very end, it was called the TMS.

It's a magnetic image, like a magnetic treatment. So a, a something like

a tool was put on the brain and it is called transcranial modulation and

it's using magnets and trying to target certain parts of the brain to use a

significant magnetic impulse to that specific part of your brain and they're

seeing that is having really good observation on the outcome of pain.

Really interesting study and there's more to come because they say that

this is an ongoing thing and we need to make sure we're really driving it

because it's the number one priority for patients as most of us

understand that for sure. So stay tuned, more to come.

[00:24:20] Tiffany: Okay, that was awesome, right? Next up, we have

Becky or Rebecca.

We've been calling her Becky. So Rebecca Hosey and Rebecca is a

health care professional, also a person living with Sjogren's disease.

And this was her first time going with us. So way to go, Becky. And this

is a highlight of her report on opioids, pain, and fatigue. So take it away.

[00:24:50] Becky: Hi everyone, Becky Hosey here again reporting on

some really cool things I learned.

The session that I watched was on fatigue, pain, and opioids, and

actually I'm going to break it up into two videos because all the

information is so important, but I don't want to overwhelm you. Just did

one long one, so I'll either record another video today or tomorrow.

Really as soon as I saw this title of the session, I knew I had to watch it.

So pain and fatigue are seriously underappreciated in our patient

population. And I also have an interest because I have over 10 years of

clinical experience working in interventional pain medicine, so I have a

bit of knowledge on this as well. The first presenter was so fascinating.

She's a rheumatologist, and she started the talk by saying how many

times her patients have reported to her that the fatigue and pain are

worse than, say, like, joint swelling or other symptoms.

And she also noted how these needs are largely unmet in our patient

population. A study in the U. S. on RA noted that the most impactful

symptoms were fatigue at 82% and pain at 76%, and sadly, in this study,

only 26% of these patients were actually satisfied with their RA

treatment.

Multiple studies suggest that fatigue is actually the number one and pain

number two most disabling symptoms regardless of whether the

condition is inflammatory or non inflammatory. So that was quite

interesting. The presenter went on to explain why fatigue and pain are

so underappreciated. And really it's that providers can, they can't see

fatigue or pain, right?

So they can see like joint deformities and they can see swollen fingers

and toes and everything, but they can't see fatigue or pain. And she also

noted, she thinks there's a lot of under reporting by patients. So patients

are not telling their providers about the symptoms either because they

don't think the provider will understand, or maybe they just think, Oh, it's

part of this disease, or they have difficulty explaining the symptoms.

Another issue that she discussed was that there's no really clear

consensus of a definition of fatigue in medicine. It's really subjective.

And it's really complicated and it has various subtypes. And she talked

about two main categories, physical fatigue and psychological fatigue,

right? So we know the physical fatigue, this low energy, this muscle

weakness, which she described as jelly legs and psychological fatigue,

the brain fog, the cognitive things, the weariness.

And of course, these types can occur together. They can occur in

combination at the same time or come back, leave, return another day,

all types of things. Interestingly, the idea of better controlling the disease

and the fatigue will get better has actually not been shown in clinical

studies. Multiple studies show the opposite.

So one in particular was a presentation that showed over 60 percent of

patients with RA, psoriatic arthritis, and spondyloarthritis who reported

fatigue even though they had really low disease activity. So their disease

was really well controlled. They still reported fatigue. So switching gears

to pain, there are accepted definitions of pain, but it's certainly not

uncomplicated.

But pain is really an unpleasant sensory and emotional experience and

this is a personalized experience, right? It's influenced by our biology,

our psychology, social factors, things that have happened to us. And

studies show that pain doesn't always equal inflammation. And studies

with patients with RMDs who complain of pain, even when in remission,

show that they still have residual pain, even though there's, the

inflammation is low and there's optimal treatment.

One presenter said that while medicine has done a really good job of

blocking pathways for inflammation, coming up with medications for

these, there really has been a poor, a poor outcome for studying and

treating pain. The three main pain categories, nociceptive pain, which

arises from actual or threatened tissue damage.

So these are of non nerve tissues and the activation of nociceptors. And

one, one presenter was in, she said, this is pain as it should be, an

alarm telling you there's something wrong. And examples of this are

tissue damage, joint inflammation. Neuropathic pain arises due to

nerves being affected and a lot of times, and not all the time, but it can

follow a dermatomal pattern, which is just a fancy term for meaning like,

how does the nerve actually distribute?

So where do you feel it? So for instance, you could have a nerve issue

in your back and not have any back pain, but you could have, a numb

foot. And a lot of times this type of pain responds pretty well to like

locally targeted treatments like nerve blocks and such like that.

Nosoplastic pain arises from altered nociception, but without clear

evidence of actual or threatened tissue damage. So like more

ambiguous. One presenter called it a volume control problem or

amplification issue. And it's usually a global problem, which means that

it's like widespread. And one presenters noted it's not just affecting pain,

but also sensitivity to light to hearing.

Right. I'm sure a lot of us have the, have that as well. So examples of

this are migraine headaches, fibromyalgia, pain reported by patients with

rheumatic disease is also in combination, often in combination. So not

just one type of pain, right? So we get multiple and they're combined and

they evolve over time.

And there was a new study, which was just published earlier this year,

which was so really interesting. That looked at patients with RA who had low inflammation. It looked like their disease status was pretty stable,

like well controlled. And, and they said, let's look at their, like their joint

fluid, right?

Let's pull out fluid from their joint and just look at it. So they actually

found a certain gene module, which had, I'm sorry, 800 different

combinations. And they said that was pretty consistent in all the

subjects, and they took these cells and put them in culture in a lab, and

the cells actually grew new nerve endings.

So this was so interesting, and again, that's really all the information I, I

have on it cause that's all really the presenter noted. But something I

want to mention, cause I think we'll be hearing about that in the future.

So at different conferences. This same presenter also noted that studies

show JAK inhibitors tend to improve pain better than some of the other

biologics like TNFs.

And she said again that traditional lab tests or even assessment tools

like looking at swollen joints tend may not be reflective of the amount of

pain a person is experiencing. A term, co culminant fibromyalgia, was

mentioned, and this basically means that there's a significant amount of

fibromyalgia that occurs in RMD patients, particularly inflammatory,

inflammatory rheumatic diseases.

And studies show that this happens about 20% of the time, and really,

like the general public, about 2% of the time. So something to really

think about. One presenter talked about primary versus secondary

fibromyalgia. And this basically has to do with which nerve pathways are

affected. And she didn't say the symptoms are different in any one or

worse than any one type.

She did say that if the product provider can figure out which pathway is a

culprit, there are different medications which could be effective, more

effective for one than the other, so that was pretty cool. There is a high

rate of being diagnosed with fibromyalgia in the first 12 months of being

diagnosed with a newly discovered inflammatory disease, and that also

traditional inflammatory markers like CRPs that didn't predict the

development of fibromyalgia.

Going back to pain and fatigue, it looks like the research suggests if you

live in a wealthy country, you're more likely to experience pain and

fatigue than those living in a lower income country. And of course, this could be due to societal pressures on the individuals in that patients in

wealthier nations tend to really have higher health expectations.

So that was pretty interesting. There are steep consequences for the

medical under appreciation of fatigue and pain, including the delay of

diagnoses, impacts on quality of life, negative mental effects, anxiety,

depression, isolation, reduced work productivity, burden on the health

care system, society

really, awareness needs to be raised among patients and health care

providers, and multiple presenters said this. We have to educate both

communities on this prevalence and the significance of fatigue and pain,

and there needs to be an open communication between providers and

patients. And really that providers should not just be focusing on your

swollen joint or a traditional lab test, but really to incorporate

comprehensive tool assessments in clinical practice regarding fatigue

and pain, that these are really vital components of your overall health

and need to be considered.

So in medicine, we call these PROMs or patient reported outcome

measurements. So hopefully your providers are doing this with you.

These factors should really lead to a tailored treatment plan, which will

be different for everybody. And that plan should be made along with the

patient. And some of the treatments might be medicines, but others like

physiotherapy or cognitive therapies or other interventions should also

be considered.

So there's a lot and that's what I wanted to share with you today. Yes, I

will have another video on the remainder of that presentation, which was

just so fascinating. Again, I'm so excited to share this with you and thank

you for watching and I will see you soon.

[00:33:59] Tiffany: All right. And last, but certainly not least, we have

Leila Valente, who is our health education manager at AiArthritis.

And she is a person living with lupus nephritis, and Sjogren's disease,

and she is going to do an overview of brain fog. Woo! Yeah, that's a big

one, right? And it's exciting to know that there is research about these

symptoms, because this is a really, really big one that many of us

struggle with, regardless of our diagnosis.

We're going to turn it over to Leila.

[00:34:33] Leila: Hello, everybody. This is Leila, Health Education

Manager here at AiArthritis, and I am back again with my fourth debrief

and super excited to let you know about what I learned today. So I am

excited to talk to you about cognitive dysfunction because it is something

that so many people in our community experience and they also don't

know why it happens or what to do sometimes or how even to approach

it and it can be a very frustrating, thing to go through.

I personally have dealt with Cognitive dysfunction issues and so I will

talk a little bit about that throughout my debrief and the patient who

spoke she everything that she said resonated with me so much that I

made my husband watch part of the session because my cognitive

dysfunction has been very active the past few months and it's been a big

topic in my household.

So I am excited to basically talk to you about what has been said in this

session. So let's dive in. I thought it would be very helpful to share the

slides for this part of the debrief. So I'm going to go ahead and do that.

So she talks about how her level of cognitive functioning was before she

got diagnosed with her disease.

She was dealing with serious and time sensitive issues, working with

basically with CPS, like child protective services and responsibility for

vulnerable children and families, need to multitask, work under pressure,

ability to plan and organize, flexibility, focus, concentration, listening and

observing skills, and being attentive for and adapt to threatening or

escalating situations.

And after she talks about how her symptoms were all over the place. So

she did a little bit of like a visual exercise of showing how all over the

place our symptoms for cognitive dysfunction can be. I copied and

pasted a whole blurb of what she was saying, and I just wanted to

highlight a few things.

This is the part that really resonated with me. And when working on my

laptop, I'm very easily distracted. I'm pretty sure many people recognize

that. When I was still working as a counselor, I worked on three or four

different files at a time, and now I have to just take one task. And it's

difficult. I end up after 30 minutes, I look at it at the bottom of my screen

and there's 12 screens open and I started reading emails, started

replying to some of them, but never finished up and etc.

And even administration, like reading, filling in forms or reading

instructions or following steps in a procedure, they can really stress me

out to, acutely to the extent that I end up in tears or with an elevated

heart rate. So she talks here a little bit about the consequences of the

brain fog and the things that happen and I think really for me the feelings

of shame and failure frustration and denial and feeling insecure or

overconfident it's been really big for me.

And I think whenever I, I, I get stressed out so easily, I get

overstimulated, I have a hard time initiating tasks and I have to really

hype myself up to go ahead and start a task and it's been really hard.

And I actually, I tried to get tested for ADHD because I thought that's

what it was. And as we were going through the tests, we came to the

conclusion that it's all through cognitive dysfunction that all of these

things are happening.

So this really hits home for me, I totally understand what she's saying.

And here is the biggest part. What can we do about it? What helps her?

What can we try to organize our brain and help us make sure that we

don't forget things? And so taking breaks is very important, doing

puzzles slash memory games, plan my day and stick to it, developing

routines, work in silence or put a special playlist together that helps you

focus instead of distracts you, being physically active helps her as well.

Doing a to do list and prioritizing, asking for help or taking a step back,

being outdoors, shutting out sensory stimuli when tired, humor, and

putting things into perspective.

And it feels like she was talking to me during this session. So this has

been, this was a really good session for me. And for the patient session,

this is the rest of her, her take home points. So cognitive dysfunction can

show in many shapes and forms. The patient may not realize the extent

or may be overcompensating or masking symptoms.

It is up to the healthcare professionals to address the topic. Try not to

ask, but also look for the signs. A small problem may have huge impact.

Psychoeducation, informing and educating patients. Transcripts can help

empower them and dealing with cognitive dysfunction is hard work,

especially when already dealing with an RMD or an AiArthritis disease.

And so that was the patient's segment of the session. And I am going to

move on to the next part of the session. And this was a very interesting

diagram that the speaker showed. It's basically showing the correlations between all of these different symptoms and cognitive dysfunction and

how it can affect.

There's other factors like vitamin deficiencies, other diseases, but

everything that's on here can contribute to cognitive dysfunction. And

just trying to address all of those different things that can affect it. And so

this speaker tried to accumulate all of the different studies that had to do

with cognitive dysfunction in order to do a overview of recommendations

and explanation and management of cognitive dysfunction.

There are other things that you can check out just to double check if

there's something else wrong. If the signs of cognitive dysfunction are

happening, some things to look at, it could be any structural brain

alterations, cardiovascular, vitamin D deficiency, hypothyroidism, vitamin

V12 or folate deficiency, and the different drugs that can be causing this

such as antipsychotics or anything having codeine, benzodiazepines,

things like that.

The speaker also says that there aren't many studies just fully done on

cognitive dysfunction. Usually they're focusing on something else and

then they have cognitive dysfunction as part of their research. So there

aren't many cognitive dysfunction dedicated research studies. The

biggest thing that you can do to help manage cognitive dysfunction

though, is treating the underlying disease.

I tend to see that whenever my infusion is due, within like maybe three

or four days, is when my brain fog is at its peak. Either that or when I'm

extremely stressed out and I know that I can probably be flaring. So

either in a flare or right before I need my infusion is when I am usually

experiencing more intense cognitive dysfunction.

So making sure that you treat the underlying disease is the main thing

that you can do. They also do talk about recommending to see an

occupational therapy, seeing if your insurance would pay for an

occupational therapy to help you with trying to cope with all of these

different symptoms and how it affects your daily life and coming up with

those routines with you and coming up with mechanisms in order to

remember things.

That's what occupational therapists do. They help us to live our everyday

life with whatever ailment we may have at that time. And the conclusion

from this segment was results tentatively indicate that levels and change of cognitive dysfunction correlate with fatigue, pain, physical inactivity,

psychological distress, and sleep problems and treating those

associated factors according to existing recommendations are points to

consider.

So if you're not sleeping well, if you have anxiety and depression, those

can definitely exacerbate your cognitive dysfunction as well as fatigue

and pain and any inactivity with exercising and things like that. The last

segment talks about very specific screening tools. So they bring up three

different screening tools, which is one, the Mini Mental State

Examination, two, the Adenbrooks Cognitive Examination, Number three

and the Montreal Cognitive Assessment test or the MOCA test. And with

the Mini mental state examination, I am familiar with that because it used

to work in senior care. So that is used a lot for seniors and for dementia

testing. And so another self report tool is mostly our questionnaires. And

this one is called MASQ, M A S Q. And it's the multiple abilities self

report questionnaire. It's a 38 item measure of self perception of

cognitive difficulties, and it focuses on language, visio perception, verbal

memory, visual memory, and attention and concentration.

And so that can still be a hard task for some people to take because it is

extensive. It's 38 items. And so they also did mention another one that's

called the Multidimensional Inventory of Subjective Cognitive Impairment

or MISCI, M I S C I. There's 10 items on there, and you basically rate

them. And it has to do with, clearly thinking without extra effort, mind

being sharp, remembering things, concentrating, shifting back and forth

between activities. That's a really big one for me. It says I have had

trouble shifting back and forth between different activities that require

thinking. I call it a buffer time, but usually my buffer time between

switching tasks is anywhere between 10 to 20 minutes and it can be

very frustrating to have to re center myself again.

Having trouble planning out the steps of a task, that is always very hard

for me as well. And trouble finding the right words or trouble expressing

myself clearly. So those are like the indicators of this test on whether or

not someone is experiencing mild, moderate, or not. extreme or severe

cognitive dysfunction.

Focus on the impact of the cognitive dysfunction and the management of

the other variables and not so much the actual symptoms but helping to

manage what the symptoms cause because unfortunately there is not

much that we can do or that we have found that we can do to help treat cognitive dysfunction besides treating underlying conditions and learning

how to cope with it. And so that was my debrief for today. I hope that you

enjoyed it and that you learned something or at least felt heard. If

cognitive dysfunction is something that you might be experiencing, I

know it could be very lonely and isolating, but it's good to know that they

are starting to do some research in this sector and hopefully in the next

few years we might even have a medication or something else that

explains or helps with cognitive dysfunction.

Thank you again for joining us this time around for our Go With Us

Program to Eular 2024. Thank you so much again, and I will see you

later. Bye.

[00:46:23] Tiffany: Okay, well, that was a sample, just a sample, of what

you can learn when you go with us to conferences, going with AiArthritis,

your peers, patients, to these conferences.

And we have another one coming up, we, every year, ACR November,

EULAR June, so make sure you go to AiArthritis.org/conferences there

you'll be able to get a link to all of our debriefs, not just from EULAR

2024, but all of the times we've gone in the past. So there's literally,

literally hundreds of resources that you can pull from these videos from

these debriefs. Also, if you go with us to conferences, there are two

ways that you can get involved. You can sign up for the daily debrief. So

you would get links to the videos and the recordings that you had just

heard or seen, depending on how you're participating today.

But also you have an elevated experience. Everything we do at

AiArthritis has the option of an elevated experience, which means you

can get more involved in activities to improve your health care journey.

In this case, you can sign up to be zapped into a slack channel. And

from there, you will be able to actually talk to myself and the other

people who go in person and ask questions.

We do behind the scenes videos, talk to researchers, talk to other

nonprofits, other advocates that might be there. It's a really unique

experience and it's free. So we definitely encourage you to sign up for

that. And also, while you're on the site, please consider a donation to the

organization.

We work hard each and every day to make sure that we're bringing the

best resources, the best patient developed resources and patient opportunities, patient led opportunities to use to improve your life and

the lives of the millions of people around the world living with our

diseases. And there you go.

That is a wrap. Signing off from Aiarthritis Voices 360. Have a fabulous

rest of your day.

Aiarthritis Voices 360 is produced by the International Heart Association.

Foundation for autoimmune and autoinflammatory arthritis. Find us on

the web at www.AiArthritis.org. Also, be sure to subscribe to this podcast

and stay up to date on all the latest AiArthritis news and events.