January 19, 2025 • 25 mins
01/19/25
The Healthy Matters Podcast
S04_E07 - Let's Learn About Lupus!
Did you know that in 2024, over 200,000 people in the U.S. alone had Lupus? It's a condition that many of us have likely heard of, but it's one that often presents with a lot of questions - like where does it come from? Who is most likely to get Lupus? Is it a life-long condition? And what help is available for those living with it?
On the next episode of the show, we'll be joined by Rheumatologist, Dr. Rawad Nasr, and he'll help us get our brains around Lupus, as well as the basics of autoimmune diseases at large. This is one condition that has seen a lot of progress in terms of treatments and medications over the past decade (finally!), so this is a great chance to get some up-to-date knowledge from an expert in the field. He'll discuss the origins of the condition (and the name!), who's at risk, what help is available from the medical community, and ways we all can support those living with it. Come get wise with us!
We're open to your comments or ideas for future shows!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Welcome to the Healthy Matters podcast with
Dr. David Hilden , primary carephysician and acute care
hospitalist at HennepinHealthcare in downtown
Minneapolis, where we cover thelatest in health, healthcare
and what matters to you. Andnow here's our host, Dr. David
Den .
Speaker 2 (00:18):
Hey everybody, it's Dr. David Hilden , your host of
the podcast. And welcome tothis episode where we're gonna
talk about lupus. Many of ushave heard about lupus. You
maybe even even know somebodywho's had it, but you really
know what it is, what causesit, what can be done about it.
So, joining me is somebody whoknows a great deal about the
subject, Dr. Awad Nasser . Heis the division director of
(00:40):
rheumatology at HennepinHealthcare in downtown
Minneapolis. Rahad , welcome.
Speaker 3 (00:44):
Thank you, David.
Great to see you again.
Speaker 2 (00:46):
Yep . And Rahad Hass been on the show before. He is
a good friend of mine. I'veknown him for many years, and
he is , uh, I would call thebest rheumatologist I know. So
, uh, I've tapped him to be onthe show again today. Start us
off, Dr . Nasser. What islupus? What branch of medicine
does it fit into?
Speaker 3 (01:01):
So, lupus, it's an autoimmune disease that affects
multiple systems in the body.
And given it's an autoimmunedisease, it falls under the
rheumatologic , uh, diseases.
So patients with lupus usuallywould see care with
rheumatologist, and ultimatelya lot of their care gets
through a rheumatologist.
Speaker 2 (01:18):
So that's what you do for a living, right ? You do
rheumatology. Back in the day,like a hundred years ago,
people talked about rheumatism,this, that, and the other
thing. It's a vastly differentfield. Now you do things like
arthritis. Correct.
Speaker 3 (01:30):
So we do things like arthritis, but also autoimmune
diseases. We do see patientswith arthritis due to wear and
tear and biomechanics, but alsowe see patients with arthritis
due to inflammation, which canoccur in multiple diseases like
rheumatoid arthritis and lupus.
Speaker 2 (01:44):
So that's what we're gonna, that's kind of to get us
grounded. Now, tell us aboutlupus itself. What is it? So
Speaker 3 (01:49):
Lupus , uh, as I said, it's autoimmune and it
affects multiple systems in thebody. Uh, for example, it
affects the skin, the joints,the kidneys, the heart, the
lungs, and sometimes ournervous system and on bone
marrow. Um , now most patients,they present usually with skin
and joint symptoms. And then wedo some additional testing and
(02:10):
sometimes we find it involvedinternal organs and sometimes
it doesn't. So
Speaker 2 (02:15):
You named just about everything. Yeah . . So
I'm gonna , I'm gonna parse outa word or two outta that
autoimmune. What does thatmean?
Speaker 3 (02:23):
Yeah , so autoimmunity. So you know, when
a patient asks me what is anautoimmune disease, I say,
okay, when a patient gets anautoimmune disease, they
usually have a geneticpredisposition. So we have the
genes for the disease, and thenwe get a stressor on our body
that triggers the genes. Thestressor could be ranging from
an infection, a medication,pregnancy, stress, trauma,
(02:45):
anything that stresses the bodycan trigger these genes. Now,
when these genes are triggered,they produce substances and
proteins that confuse theimmune system. So immune system
goes up in the body, confusedand starts to attack our own
body, which is not what it wasdesigned to do. Immune system
was designed to go up in the ,in the setting of infections,
to fight infections, but it'sbecause it's confused. It goes
up in the body and then itstarts to attack our own body.
(03:06):
Now, wherever it goes in thebody, we call the disease. So
if it goes to our skin andcause this rash on the face and
sores in our mouth andarthritis and maybe sometimes
the kidneys, we call it lupus.
If it only goes to the jointsand cause inflammation, certain
joints, we call it rheumatoidarthritis. If it goes to our
bowels, we call it Crohn'sdisease, et cetera . So the
name of the disease is wherethe immune system is confused
(03:27):
and active and causinginflammation and damage.
Speaker 2 (03:29):
That was really helpful , um, because, you
know, I know lupus as somethingthat that's kind of all over
the place, but it's your ownbody somehow a genetic
disposition that got triggeredto attack your own body in
wherever it happens. That'sreally , that was a really good
description. Thank you. Sobefore we get onto the symptoms
about what does it look like ona real human body, I wanna talk
about the origins of the , ofwhat it's called. It's called
(03:51):
lupus, but it's real name islonger than that. It's real
name is SLE, systemic lupus.
Erythema ptosis. That's for allyou trivia nerds out there. You
can thank me next time you winpub trivia. But we normally
shorten all that to lupus. Whatthe heck? What is , where does
that word come from?
Speaker 3 (04:08):
Yeah, so lupus is a Latin word and what it means is
wolf. And it was used todescribe lupus in the skin
because it resembled a wolfbite. So now these days we call
it discoid lupus, that thattype of lesion. But it
basically goes , it resembles awolf bite. They called it
lupus.
Speaker 2 (04:25):
Historically, that is an awfully creative naming
for an A disease. Okay. Sothat's the origins of SLE,
otherwise known as lupus. Now,shift gears. What does it look
like in a human body? What arethe symptoms?
Speaker 3 (04:36):
Yes . So as I said, most patients they present with
skin and joint disease. So theypresent with pain and swelling
in the joints, stiffness in thejoints, usually the hands of
the feet , uh, the elbows, theshoulders in asymmetric fashion
in both sides of the body.
Patients present with a rash onthe face. Butterfly rash we
call it. That was triggered bysun because that
Speaker 2 (04:53):
Looks like a butterfly.
Speaker 3 (04:53):
It looks like a butterfly on the face. Exactly.
And it's usually triggered bysun exposure. So we call it
photo sensitive rash. Also,they can get , um, as we
mentioned, disco lupus, whichare like ulcers on the skin
that you see on the face. Andthe upper extremities, mouth
sores, sores in the nose, hairloss, chest pain with
breathing. Usually those arethe symptoms that triggers the
(05:14):
patient. Something's happeningin my body. I need to see
primary care or rheumatologistfigure this out. Yeah. Be
Speaker 2 (05:19):
Before you get onto other things in the body. A lot
of people listening right now,I bet I'm thinking, well , my
joints hurt . Do I have lupus?
How do you know if it'ssomething that that could be
part of this larger diseaseprocess other than, you know ,
I got , I got osteoarthritis.
Speaker 3 (05:34):
Right. So two th great question. So two things.
One, the arthritis isinflammatory. So patients
should, will feel the pain atrest. So the , the hands and
are are for example, swollen,painful at rest without even
using them. And it's very hardto do fists. And then they're
stiff in the morning for like30 minutes, an hour. So if
they're very stiff in theirjoints and they're swelling and
pain to the extent where theycan't use their joints even for
(05:56):
simple movements, then this issignificant arthritis. And the
second part, the arthritis hasto be with other symptoms that
I mentioned. Skin involvement,rashes, mouth sores, hair loss,
chest pain. 'cause sometimes ifit's only arthritis, it could
be just rheumatoid arthritis,for
Speaker 2 (06:10):
Example. Mm-hmm . Which is
another inflammatory arthritis.
Another
Speaker 3 (06:13):
Inflammatory arthritis. Correct .
Speaker 2 (06:14):
Which leads to the stiff hands. Correct. So stiff
hands joints worse in themorning. Right. And some of
these other symptoms. Correct.
What other organs can itaffect?
Speaker 3 (06:23):
Yeah , the main internal organ that can affect
is are the kidneys. So , uh, alot of patients have decreased
kidney function, high bloodpressure, and then sometimes
they see a nephrologist. Andthe nephrologist recommend a
kidney biopsy to figure outwhat's going on. They have
lupus in the kidneys. The otherorgan that can involve is the
nervous system, whether it'sour peripheral nerve , the
(06:44):
nerves in our body or thebrain. And uh , some patients
can present it . It varies fromsimple headaches to like
seizures and confusion toweakness in certain parts of
the body. Uh, and then also thelungs and the heart. A lot of
patients can have inflammationaround the lungs, tissue and
around the heart tissue. Theycan get chest pains due to
inflammation in the heart andthe lungs. And rarely,
(07:05):
sometimes they can involve thelungs inside the lungs so they
can present with cough,shortness of breath. So
basically it can involve thelung, the heart, the kidneys,
and the nervous system. Andfinally the bone marrow. So
bone marrow, yeah,inflammation, the bone marrow.
So we have less cell counts,less white blood cells or less
red blood cells. So we haveless white blood cells. They
can have more infection or moreeven allergies. Or if they have
(07:26):
less red blood cells , they'reanemic, they're weak. Uh , the
patients feel weakness,fatigue, which is also part of
the symptoms. Fatigue , um,fatigue, brain fog, as I
mentioned , uh, I didn'tmention that, but brain fog
also is part of the nervoussystem. This
Speaker 2 (07:38):
Isn't fair, you know , um, you know, I do know some
dear friends of mine who havelupus and I have a lot of
patients with 'em. But thisaffects so many organs.
Speaker 3 (07:48):
Absolutely. It's our , one of our most challenging
autoimmune disease. A lot ofour immune pathways get
affected in lupus. So it's likewhere it goes everywhere, it ,
it's, it's immune your
Speaker 2 (07:58):
Skin and your bone marrow. Those are not exactly
related places in your body.
Right .
Speaker 3 (08:01):
It's an immune system. Mayhem, if you want. It
is mayhem from an immunologistperspective, I mean
Speaker 2 (08:05):
The timeframe. Yes.
Is it a quick thing or a suddenthing?
Speaker 3 (08:09):
You most patients, it's a chronic thing. It's a
slow thing. So symptoms developover month or years. But
sometimes some patients, whenwe see them in the hospital,
particularly here at HCMC,sometimes they're at this ,
they present as sick. Forexample, they come with
shortness of breath, coughingup really
Speaker 2 (08:25):
Late in the disease, late in the disease . Or
advanced problems. Yeah ,
Speaker 3 (08:27):
Disease . Correct.
Or their kidney function isreally reduced. So a lot of
it's usually slow, butsometimes it comes sudden .
Now, interestingly, lupus , um,I'll mention it now since we're
talking about how patientspresent, it's usually more in
women than men. Um , so inwomen it's usually presents
with every, with the , thesymptoms we mentioned, you
know, skin joints and thekidneys. In men, it
(08:49):
interestingly presents usuallyin internal organs. Ah . So a
lot of
Speaker 2 (08:52):
Times without the skin stuff,
Speaker 3 (08:53):
Without the skin stuff, a lot of times, times
they're in the kidney clinic,they biopsy , uh, you know, the
kidney and they find lupusnephritis and oh , you have
lupus and then we see them.
They could be just the kidneysor they could have a little bit
of symptoms. So there's also adifference in how it presents
between a gender , uh, in thatsense. And
Speaker 2 (09:09):
It's younger people too, right?
Speaker 3 (09:11):
It's young, correct.
It's usually childbearing age,you know, 18 to 44. But yes,
classically patients presentmostly 'cause they have joint
pain and rashes and mouthsores. But as I said, sometimes
it presents in the internalorgan without the other
symptoms, which makes it moreconfusing and challenging to
diagnose. How
Speaker 2 (09:30):
Common is lupus?
Speaker 3 (09:32):
Yeah , so lupus , uh, globally, it's about , uh,
44 persons per hundred thousandin the United States, about 72
per hundred thousand. The CDCestimates about 204,000 people
in the US uh, who have lupus in2024. So
Speaker 2 (09:45):
It's not particularly common, but that's
not rare. Correct.
Speaker 3 (09:48):
Um, those
Speaker 2 (09:49):
Are two different things. Correct. Some diseases
are very, very rare. You mightsee 'em once in your career,
whereas you see lupus all thetime. Correct.
Speaker 3 (09:57):
In rheumatology at , especially in our, in our
hospital safety net hospital,we see a lot of lupus patients
in our clinic right
Speaker 2 (10:03):
Now . Yeah . That's not in the general population.
That's not
Speaker 3 (10:05):
General population.
But , but , but
Speaker 2 (10:06):
It is something that is not, it's not like this
thing you're never gonna see inyour lifetime. It's uh , it's
not common, but it's actually,it's
Speaker 3 (10:13):
Around. I agree.
Speaker 2 (10:14):
Um, what about family history? Does that
matter?
Speaker 3 (10:16):
Yes. Family history matters. If patients have
family history of lupus , uh,they're at higher risk of
getting , uh, lupus for sure.
So
Speaker 2 (10:24):
Let's talk about somebody coming in to see you.
They're in your rheumatologyclinic. Maybe they've had some
, uh, these symptoms we've beentalking about. They saw their
primary care person and theysaid, this sounds like
something more than just alittle, you know , joint pain.
I'm gonna send you to therheumatologist. When they get
to see you, how do you diagnoseit?
Speaker 3 (10:41):
So one, we take a lot of history like as we were
talking, so we have to ask alot of questions because
there's so many symptoms areinvolved. So a lot of good
history taking. And after we doa very thorough history taking,
then we examine to see do wefeel swelling in the joints? Do
we see a mouth sore in theupper mouth? The classic lupus
mouth. We measure, we examinethe skin, do we see the classic
(11:03):
rash in the skin? We ma we lookat thecal. So a very thorough
physical exam. And then bloodand urine tests , uh, because
there are certain blood teststhat are treated with lupus,
Speaker 2 (11:13):
But they're not fully diagnostic. Are they? Is
there one blood test ? Correct. Can , isn't there just one
blood test? There's one bloodtest. Get it and tell me if I
have it or not. There's not,there's
Speaker 3 (11:21):
Not, there's highly sensitive tests. Okay. But to
diagnose lupus and in general,honestly to diagnose rheumatic
disease, you have to have twothings. You have to have
serologies or blood tests. Yes.
And you have to have thephysical exam and the history.
It's the combination of thefindings by history taking and
physical exam and the test thatgive you the diagnosis.
Speaker 2 (11:40):
So it's not just a blood test that any old doctor
can do. You need the bloodtests . You need the physical
exam . And you need a smartrheumatologist
Speaker 3 (11:46):
Basically. Yes.
, I
Speaker 2 (11:47):
Think you're kind of a smart guy. I think you're
kind of a smart guy . What ,what about um, x-rays?
Speaker 3 (11:52):
Uh, x-rays, you know, x-rays can be helpful
because patients with lupus canhave arthritis. Sometimes we
get x-rays of the hands becauseit can help differentiate that
the patient does not haverheumatoid arthritis. Now,
interestingly, because again,it's autoimmune disease, some
patients have two autoimmunediseases. Some, some patients
we find they have lupus andthen we do x-ray. They actually
(12:13):
have also rheumatoid arthritis.
Mm-hmm . So we call it tolupus. Okay. So patients have
both lupus,
Speaker 2 (12:18):
I can't yr like that, roha .
Speaker 3 (12:20):
So, but x-rays are helpful but not, they're
helpful to exclude other, otherdiseases that are present with
lupus, but not for lupus perse. If that makes sense. I
Speaker 2 (12:28):
Think I know the answer to this, but how
important is it to diagnose itearly?
Speaker 3 (12:32):
Yes. Uh, lupus is very important to diagnose it
early because if we diagnose itearly, there are some
medications and interventionswe can do that limits its
progression or decreases therisk of it progressing to
involve internal organs. 'causethe challenge of lupus is when
it's in the skin and the joint,it's bothersome to the patient.
Absolutely. And it's, it'sbothersome and we can treat it.
(12:52):
But once it's involved , theinternal organs becomes more
challenging and rarely,sometimes life threatening or
organ threatening, especiallyfor the kidneys. So a lot of
patients who develop lupusnephritis might end up on
dialysis or ultimately needkidney transplant. So the
importance of early diagnosisis early intervention to reduce
the risk of progression ofinternal organ involvement. So
Speaker 2 (13:11):
We're gonna take a short break. I'm talking with
Dr. Rahad Nasser . He heads upthe rheumatology division at
Hennepin Healthcare and is thesmartest guy I know. When we
come back, we'll talk abouttreatment options for lupus and
what else you need to knowabout this disease. Stick
around, we'll be right back.
Speaker 4 (13:26):
When Hennepin Healthcare says we are here for
life, they mean here for you,your life and all that it
brings. Hennepin Healthcare hasa hospital HCMC and a network
of clinics both downtown andacross the west metro. They
provide all the primary careand specialty care you would
expect to find, but did youknow they also have services
like acupuncture andchiropractic care available at
(13:49):
many of their primary careclinics and at their
integrative health clinic indowntown Minneapolis. Learn
more@hennepinhealthcare.org.
Hennepin Healthcare is here foryou and here for life.
Speaker 2 (14:05):
And we're back talking about lupus with Dr.
Rahad Nasser . So Rahad , isthere anything you can do to
avoid this or is this justsomething you're destined to
get?
Speaker 3 (14:14):
Well, there are some , uh, preventative measures
that patients can do, but alsothese measures could be related
to general health. For example,smoking, you know , um, smoking
cessation. Avoiding smokingreduces the risk of patients
developing lupus. Now ofcourse, exercising and eating
healthy and sleeping well arealways things we encourage our
patients in general to do. Andthey do reduce the risk of
(14:35):
lupus. But as you know, or
Speaker 2 (14:37):
At least reduce your risks of symptoms if you do
have it correct.
Speaker 3 (14:41):
So you're right, if you , if the , if the healthy
lifestyle and avoided smokingeither reduces the risk of
having it and if the patientdevelop it, usually the
symptoms are milder. So it cancome in a milder form or delay
its progression. Now obviouslya lot of people do all these
right things and they stilldevelop severe lupus because of
that genetic predisposition wespoke about.
Speaker 2 (15:01):
So let's talk about treatment. What are the steps
you take when someone gets thediagnosis? So
Speaker 3 (15:05):
The first thing we do when we diagnose someone
with lupus, everybody has to beon a medication called
hydroxychloroquine orPlaquenil. At least we try it
for everybody. We offer it foreverybody, we counsel it for
everybody
Speaker 2 (15:16):
Because it's the first thing you use.
Speaker 3 (15:17):
It's the first thing you use. Because
hydroxychloroquine, even if itdoesn't help the symptoms in
the long term , it showed , uh,it , it was very beneficial in
reducing the risk of developinglupus in your internal, in the
patient's internal organs.
People who tookhydroxychloroquine versus who
did not. And had lupus livedlonger, had less lupus flares,
had less heart attacks andstrokes, cardiovascular events.
(15:38):
So it's a very beneficialmedication in the long term .
So
Speaker 2 (15:41):
Everybody should be on hydroxychloroquine if they
tolerate has lupus. Correct .
Now many listeners mightremember that drug made a big
splash about five years ago.
Yes. during the Covidpandemic. Correct. It's where
hydroxychloroquine became partof everybody's daily vocabulary
because there was this miff ,I'm gonna go with Miff that it
(16:02):
treated COVID , uh, but you'vebeen using it for a much longer
period of time for a differentreason. Right. I just want to
clarify.
Speaker 3 (16:09):
Yes.
Hydroxychloroquine has beenused for lupus for a long time.
We use at a low safe dose andmost patients tolerated. And
it's, it's a , it's a veryimportant medication in lupus
to try. Obviously there's aminority of patient lupus who
don't tolerate the medicine, sowe stop it. But if a patient
has lupus, they have to atleast have tried to take this
Speaker 2 (16:26):
Medicine. Okay, so what's next after that? Yes .
Because that one's an oldmedicine. Correct.
Speaker 3 (16:30):
Then , uh, as part of the old medicines, the
interesting part of lupus iswhich organ it is involving.
You use a medication for it. Soif it's involving the skin and
the joints, it's a set ofmedications. If it's involving
an internal organ like kidneysor lungs or heart or the brain,
it's another set ofmedications. Now , uh, the old
school medication we use is amedicine called methotrexate,
which helps skin and jointdisease. We've used
(16:51):
azathioprine, another oldschool medicine that helps skin
and joint disease. Now, if thekidneys are involved, we use a
medicine called mycophenolatemofetil or even a form of
chemotherapy cyclophosphamidethat can help the kidneys. And
Speaker 2 (17:03):
None of those are advertised on tv?
Speaker 3 (17:06):
No , they're not.
But they're solid.
Speaker 2 (17:07):
But so , so those, that's why that's kind of why I
call 'em the old school onesbecause about two thirds of TV
commercials for medicationssay, ask your rheumatologist if
yes , blah, blah , blah isright for you. Well you're a
rheumatologist. So what are thenew school
Speaker 3 (17:22):
Ones? Yes . So for the new uh , medications , uh,
biologics, we have twobiologics for lupus. Uh, one is
called benlysta or belimumab.
It reduces B cells , a type ofwhite blood cells. And the
other one is called, it's a newmedicine that just recently got
FDA approved , it's called salo, which , um, blocks the
interferon pathway. And uh, weuse these medications for skin
(17:44):
joint , uh, disease. And I'llhave to say the , the latest
medication salo has been veryeffective , uh, in lupus
medication. And it was acelebration neuro rheumatology
community when thesemedications came up . 'cause
these are the first FDAapproved medications for lupus
for years and decades, we didnot have anything that was FDA
approved , uh, except thehydroxychloroquine.
Speaker 2 (18:02):
Everything else was, it was you were using
medications designed forsomething else
Speaker 3 (18:07):
Off-label by experience of , I don think I
knew that. Yeah. So the newbiologics, they've,
Speaker 2 (18:12):
They
Speaker 3 (18:12):
Actually approved for lupus? Yes. And I have to
say , uh, they're actually moreeffective. We have more
medications to offer patientsthan previous years to help
with their lupus.
Speaker 2 (18:20):
Before I get off on medications, I wanna talk about
one that many people have heardof Prednisone. When should a
patient with lupus be takingprednisone?
Speaker 3 (18:27):
Yes. So patients with lupus, we do start them on
prednisone. Now, again, in thepast, before all these meds, a
lot of patients were onprednisone, high doses for a
long time
Speaker 2 (18:36):
Now with side effects, Melissa , as long as
your arm. Yeah , yeah .
Speaker 3 (18:39):
But now prednisone, we do start patients on
prednisone for lupus. But nowwe lower the dose, we taper it
down to a reasonable dose oreven to zero in some situations
with the new medications. But alot of patients with lupus are
still on low dose, like fivemilligrams of prednisone
Speaker 2 (18:54):
Because it's an inflammatory condition. It's ,
and there's no betteranti-inflammatory than
prednisone,
Speaker 3 (18:58):
Than prednisone.
Yeah . So prednisone still workand we try to manage the side
effects around it or keep it ata low dose. The other thing
I'll mention is we do screenfor vitamin D, 'cause vitamin D
deficiency. We try to replenishvitamin D , uh, because it
decreases risk of , uh, lupusflareups and might help with
some of the patient's symptomslike fatigue particularly. But
again, it's not like very clearit'll help. But it's something
(19:19):
we do intervene to try to helpwith some of the symptoms.
Speaker 2 (19:23):
I wanna shift into talking about the impact on
people's lives. When you havea, a systemic condition, when I
say systemic, I mean it'stouching on all these organs of
your body. A systemic conditionthat is a chronic condition
that we manage. I'm gonna , I'mgonna go out on a limb and say
that we don't have a cure forin lupus case, right?
Speaker 3 (19:41):
Correct. We do not have a cure for lupus. We have
medicines that suppress theimmune system enough so it
doesn't attack our own body andcause trouble.
Speaker 2 (19:49):
So let's talk about the impact that might have on
someone's life. Um , depending,you know, you , it could be any
one of these organs, but a lotof these things aren't visible
to other people and yet peopleare living with this every day
. Can you think of how in yourpatients, how living with lupus
can affect their lives?
Speaker 3 (20:05):
It's very hard.
Living with lupus is very hardfor, for multiple reasons. One,
it's a chronic disease that forwhich there's no cure. There's
these medications that keep itin remission keeps the immune
system for not flaring up andattacking the body. And so
these medications also havepotential side effects. So they
require a lot of monitoring, alot of clinic visits, a lot of
lab testing. And then sometimesyou have to go through trial
(20:26):
and error of medications tillyou get the right medication .
Sometimes it takes a year toget the patient on medicine
that they tolerate and worksfor their disease. So there is
the chronicity of the diseaseand the , the disease itself is
complicated and requires thesemedications that require a lot
of monitoring, a lot of clinicvisits. So it's a lot of stress
on the person just dealing withthe disease. Also, patients
with lupus mentioned they havea, a lot of fatigue. A lot of
(20:48):
pain, and then a lot of brainfog, difficulty finding words,
memory issues. And so a lot oftimes they are struggling in
their workplace or with theirfamily and people might not
understand what is going on.
And I've seen a lot of patientswho go on disability because of
lupus. 'cause they cannotfunction even mentally, not
just physically. So it's adisease that can stress both
(21:10):
the mental state and thephysical state and they cannot
perform as they used to attheir workplace.
Speaker 2 (21:15):
Yeah , I won't say her name, but I have a good
friend who's a , a brilliant,intelligent, smart physician
who has lupus. And it'schallenging to get through a
day with things that peoplecan't see with fatigue and pain
and that brain fog that you'retalking about. Absolutely . And
so you do and and , and peopledon't understand , uh, because
they can't see that it , it ,it , there's no nothing that
(21:36):
the casual observer, but shewould probably echo what you
just said, that sometimes it'svery hard to get through your
day. Uh, um, and , and it canbe disabling
Speaker 3 (21:45):
Absolutely mentally and then energy wise , you
know, a a little bit of effortin lupus patient can cause a
lot of fatigue and requires alot of rest for the body to to,
to get that energy back towhere it should be so that they
can function. Talk about
Speaker 2 (21:57):
The future. We've now got some medicines that are
specifically FDA approved forlupus. What do you see down the
road?
Speaker 3 (22:04):
Yeah , so for the future, there are many
medications right now in thepipeline we call like that are
on studies to try to controllupus better. Um, as I
mentioned, the recent medicinesof nlo is a breakthrough. I
think by experience, especiallywith the latest rheumatology
conferences. In addition to thestudies and the ads , the
experienced by rheumatologists, we're seeing good response
with this medicine anecdotally.
(22:24):
But there are many medicationin the pipeline that promise to
keep this disease in remission.
We don't have cures again, wehave medicines that suppress
the immune system.
Speaker 2 (22:32):
A cure would've to be, would've to go after the
genetic component, wouldn't it?
Correct.
Speaker 3 (22:36):
It would be like maybe a gene therapy in the
future. The other thing in thefuture that can help us to
avoid the trial and error ofmedicine, if there is like a
genetic testing that tells usthis patient has this type of
lupus and respond to thismedicine, instead of trying
four or five medication tillyou reach the medication that
will help. This is it. You
Speaker 2 (22:53):
Get it right the first time with all that trial
and error. Yeah. And the
Speaker 3 (22:56):
Challenge of these medicines, each one takes about
three months to try to see ifit works. It's not like a
medicine you try for a week andsay, yep , it worked for my
lupus. You have to take it forthree months before you
considered it failed. 'causesome patients it takes three
months on the medicine to calmthat part of the immune system
that is hyperactive and causingtrouble. So if
Speaker 2 (23:12):
You knew ahead of time medicine A is likely to be
more helpful for your style oflupus than medicine B, you
would know which one to useright from the beginning.
Speaker 3 (23:20):
That would be absolute dream for a
Speaker 2 (23:23):
Rheumatologist .
Yeah, I'll bet that'd be good.
Speaker 3 (23:23):
And for the patients. Yeah.
Speaker 2 (23:25):
Yeah,
Speaker 3 (23:25):
Absolutely.
Speaker 2 (23:26):
Lupus, that's a disease that we've been talking
about with Dr. Awad Nasser, arheumatologist and good friend
of mine here at HennepinHealthcare. If you have , um,
concerns about rheumatologicdiseases, whether it be lupus
or any of the other ones , um,that we mentioned earlier,
whether it be rheumatoidarthritis or maybe it's about
gout, you don't get a betterset of rheumatology colleagues
than you do at here at HennepinHealthcare in downtown
(23:47):
Minneapolis. Okay. If you couldleave us with one or two things
for people to take home aboutlupus, what would they be?
Speaker 3 (23:54):
One, you know, my experience with patient with
lupus, they need a lot ofpsychosocial support. So if you
know someone who has lupus,please try to help them as much
as you can, support themsocially, be very patient with
them and try to understandwhere they're coming from. It's
hard to see pain, fatigue andbrain fog. Mm-hmm
. But I've seen too many peoplego on disability because of
(24:14):
this disease. And I'm hoping inthe future we can find a really
good medicine and as I said,try to avoid the error and
trial and try to get thisdisease control so people can
live their lives as best as
Speaker 2 (24:25):
They can. I like that, the human aspect of it.
If you know somebody withsymptoms or you know somebody
with diagnosis, some, somesupport networks are a great
idea.
Speaker 3 (24:33):
Absolutely. We always try to encourage spouses
to come sometimes with thepatients so that they can
understand where we're comingfrom and where the patient's
coming from.
Speaker 2 (24:40):
Awa thanks for being on the show.
Speaker 3 (24:41):
Thank you for having me, David . It's
Speaker 2 (24:43):
Always pleasure.
It's been , it's been greathaving you. We've been talking
about Lupus with Dr. RahadNasser here at Hennepin
Healthcare from sunny downtownMinneapolis. I hope you've
picked up some new tips fromthis as I have. And I hope
you'll join us for our nextepisode in two weeks time. And
in the meantime, be healthy andbe well.
Speaker 1 (25:00):
Thanks for listening to the Healthy Matters podcast
with Dr. David Hilden . To findout more about the Healthy
Matters podcast or browse thearchive, visit healthy
matters.org. Got a question ora comment for the show, email
us at Healthy matters@hcme.orgor call 6 1 2 8 7 3 talk.
There's also a link in the shownotes. The Healthy Matters
(25:22):
Podcast is made possible byHennepin Healthcare in
Minneapolis, Minnesota, andengineered and produced by John
Lucas At highball Executiveproducers are Jonathan, CTO and
Christine Hill . Pleaseremember, we can only give
general medical advice duringthis program, and every case is
unique. We urge you to consultwith your physician if you have
a more serious or pressinghealth concern . Until next
(25:44):
time , be healthy and be well .
Welcome to the Healthy Matters podcast with
Dr. David Hilden , primary carephysician and acute care
hospitalist at HennepinHealthcare in downtown
Minneapolis, where we cover thelatest in health, healthcare
and what matters to you. Andnow here's our host, Dr. David
Den .
Speaker 2 (00:18):
Hey everybody, it's Dr. David Hilden , your host of
the podcast. And welcome tothis episode where we're gonna
talk about lupus. Many of ushave heard about lupus. You
maybe even even know somebodywho's had it, but you really
know what it is, what causesit, what can be done about it.
So, joining me is somebody whoknows a great deal about the
subject, Dr. Awad Nasser . Heis the division director of
(00:40):
rheumatology at HennepinHealthcare in downtown
Minneapolis. Rahad , welcome.
Speaker 3 (00:44):
Thank you, David.
Great to see you again.
Speaker 2 (00:46):
Yep . And Rahad Hass been on the show before. He is
a good friend of mine. I'veknown him for many years, and
he is , uh, I would call thebest rheumatologist I know. So
, uh, I've tapped him to be onthe show again today. Start us
off, Dr . Nasser. What islupus? What branch of medicine
does it fit into?
Speaker 3 (01:01):
So, lupus, it's an autoimmune disease that affects
multiple systems in the body.
And given it's an autoimmunedisease, it falls under the
rheumatologic , uh, diseases.
So patients with lupus usuallywould see care with
rheumatologist, and ultimatelya lot of their care gets
through a rheumatologist.
Speaker 2 (01:18):
So that's what you do for a living, right ? You do
rheumatology. Back in the day,like a hundred years ago,
people talked about rheumatism,this, that, and the other
thing. It's a vastly differentfield. Now you do things like
arthritis. Correct.
Speaker 3 (01:30):
So we do things like arthritis, but also autoimmune
diseases. We do see patientswith arthritis due to wear and
tear and biomechanics, but alsowe see patients with arthritis
due to inflammation, which canoccur in multiple diseases like
rheumatoid arthritis and lupus.
Speaker 2 (01:44):
So that's what we're gonna, that's kind of to get us
grounded. Now, tell us aboutlupus itself. What is it? So
Speaker 3 (01:49):
Lupus , uh, as I said, it's autoimmune and it
affects multiple systems in thebody. Uh, for example, it
affects the skin, the joints,the kidneys, the heart, the
lungs, and sometimes ournervous system and on bone
marrow. Um , now most patients,they present usually with skin
and joint symptoms. And then wedo some additional testing and
(02:10):
sometimes we find it involvedinternal organs and sometimes
it doesn't. So
Speaker 2 (02:15):
You named just about everything. Yeah .
I'm gonna , I'm gonna parse outa word or two outta that
autoimmune. What does thatmean?
Speaker 3 (02:23):
Yeah , so autoimmunity. So you know, when
a patient asks me what is anautoimmune disease, I say,
okay, when a patient gets anautoimmune disease, they
usually have a geneticpredisposition. So we have the
genes for the disease, and thenwe get a stressor on our body
that triggers the genes. Thestressor could be ranging from
an infection, a medication,pregnancy, stress, trauma,
(02:45):
anything that stresses the bodycan trigger these genes. Now,
when these genes are triggered,they produce substances and
proteins that confuse theimmune system. So immune system
goes up in the body, confusedand starts to attack our own
body, which is not what it wasdesigned to do. Immune system
was designed to go up in the ,in the setting of infections,
to fight infections, but it'sbecause it's confused. It goes
up in the body and then itstarts to attack our own body.
(03:06):
Now, wherever it goes in thebody, we call the disease. So
if it goes to our skin andcause this rash on the face and
sores in our mouth andarthritis and maybe sometimes
the kidneys, we call it lupus.
If it only goes to the jointsand cause inflammation, certain
joints, we call it rheumatoidarthritis. If it goes to our
bowels, we call it Crohn'sdisease, et cetera . So the
name of the disease is wherethe immune system is confused
(03:27):
and active and causinginflammation and damage.
Speaker 2 (03:29):
That was really helpful , um, because, you
know, I know lupus as somethingthat that's kind of all over
the place, but it's your ownbody somehow a genetic
disposition that got triggeredto attack your own body in
wherever it happens. That'sreally , that was a really good
description. Thank you. Sobefore we get onto the symptoms
about what does it look like ona real human body, I wanna talk
about the origins of the , ofwhat it's called. It's called
(03:51):
lupus, but it's real name islonger than that. It's real
name is SLE, systemic lupus.
Erythema ptosis. That's for allyou trivia nerds out there. You
can thank me next time you winpub trivia. But we normally
shorten all that to lupus. Whatthe heck? What is , where does
that word come from?
Speaker 3 (04:08):
Yeah, so lupus is a Latin word and what it means is
wolf. And it was used todescribe lupus in the skin
because it resembled a wolfbite. So now these days we call
it discoid lupus, that thattype of lesion. But it
basically goes , it resembles awolf bite. They called it
lupus.
Speaker 2 (04:25):
Historically, that is an awfully creative naming
for an A disease. Okay. Sothat's the origins of SLE,
otherwise known as lupus. Now,shift gears. What does it look
like in a human body? What arethe symptoms?
Speaker 3 (04:36):
Yes . So as I said, most patients they present with
skin and joint disease. So theypresent with pain and swelling
in the joints, stiffness in thejoints, usually the hands of
the feet , uh, the elbows, theshoulders in asymmetric fashion
in both sides of the body.
Patients present with a rash onthe face. Butterfly rash we
call it. That was triggered bysun because that
Speaker 2 (04:53):
Looks like a butterfly.
Speaker 3 (04:53):
It looks like a butterfly on the face. Exactly.
And it's usually triggered bysun exposure. So we call it
photo sensitive rash. Also,they can get , um, as we
mentioned, disco lupus, whichare like ulcers on the skin
that you see on the face. Andthe upper extremities, mouth
sores, sores in the nose, hairloss, chest pain with
breathing. Usually those arethe symptoms that triggers the
(05:14):
patient. Something's happeningin my body. I need to see
primary care or rheumatologistfigure this out. Yeah. Be
Speaker 2 (05:19):
Before you get onto other things in the body. A lot
of people listening right now,I bet I'm thinking, well , my
joints hurt . Do I have lupus?
How do you know if it'ssomething that that could be
part of this larger diseaseprocess other than, you know ,
I got , I got osteoarthritis.
Speaker 3 (05:34):
Right. So two th great question. So two things.
One, the arthritis isinflammatory. So patients
should, will feel the pain atrest. So the , the hands and
are are for example, swollen,painful at rest without even
using them. And it's very hardto do fists. And then they're
stiff in the morning for like30 minutes, an hour. So if
they're very stiff in theirjoints and they're swelling and
pain to the extent where theycan't use their joints even for
(05:56):
simple movements, then this issignificant arthritis. And the
second part, the arthritis hasto be with other symptoms that
I mentioned. Skin involvement,rashes, mouth sores, hair loss,
chest pain. 'cause sometimes ifit's only arthritis, it could
be just rheumatoid arthritis,for
Speaker 2 (06:10):
Example. Mm-hmm
another inflammatory arthritis.
Another
Speaker 3 (06:13):
Inflammatory arthritis. Correct .
Speaker 2 (06:14):
Which leads to the stiff hands. Correct. So stiff
hands joints worse in themorning. Right. And some of
these other symptoms. Correct.
What other organs can itaffect?
Speaker 3 (06:23):
Yeah , the main internal organ that can affect
is are the kidneys. So , uh, alot of patients have decreased
kidney function, high bloodpressure, and then sometimes
they see a nephrologist. Andthe nephrologist recommend a
kidney biopsy to figure outwhat's going on. They have
lupus in the kidneys. The otherorgan that can involve is the
nervous system, whether it'sour peripheral nerve , the
(06:44):
nerves in our body or thebrain. And uh , some patients
can present it . It varies fromsimple headaches to like
seizures and confusion toweakness in certain parts of
the body. Uh, and then also thelungs and the heart. A lot of
patients can have inflammationaround the lungs, tissue and
around the heart tissue. Theycan get chest pains due to
inflammation in the heart andthe lungs. And rarely,
(07:05):
sometimes they can involve thelungs inside the lungs so they
can present with cough,shortness of breath. So
basically it can involve thelung, the heart, the kidneys,
and the nervous system. Andfinally the bone marrow. So
bone marrow, yeah,inflammation, the bone marrow.
So we have less cell counts,less white blood cells or less
red blood cells. So we haveless white blood cells. They
can have more infection or moreeven allergies. Or if they have
(07:26):
less red blood cells , they'reanemic, they're weak. Uh , the
patients feel weakness,fatigue, which is also part of
the symptoms. Fatigue , um,fatigue, brain fog, as I
mentioned , uh, I didn'tmention that, but brain fog
also is part of the nervoussystem. This
Speaker 2 (07:38):
Isn't fair, you know , um, you know, I do know some
dear friends of mine who havelupus and I have a lot of
patients with 'em. But thisaffects so many organs.
Speaker 3 (07:48):
Absolutely. It's our , one of our most challenging
autoimmune disease. A lot ofour immune pathways get
affected in lupus. So it's likewhere it goes everywhere, it ,
it's, it's immune your
Speaker 2 (07:58):
Skin and your bone marrow. Those are not exactly
related places in your body.
Right .
Speaker 3 (08:01):
It's an immune system. Mayhem, if you want. It
is mayhem from an immunologistperspective, I mean
Speaker 2 (08:05):
The timeframe. Yes.
Is it a quick thing or a suddenthing?
Speaker 3 (08:09):
You most patients, it's a chronic thing. It's a
slow thing. So symptoms developover month or years. But
sometimes some patients, whenwe see them in the hospital,
particularly here at HCMC,sometimes they're at this ,
they present as sick. Forexample, they come with
shortness of breath, coughingup really
Speaker 2 (08:25):
Late in the disease, late in the disease . Or
advanced problems. Yeah ,
Speaker 3 (08:27):
Disease . Correct.
Or their kidney function isreally reduced. So a lot of
it's usually slow, butsometimes it comes sudden .
Now, interestingly, lupus , um,I'll mention it now since we're
talking about how patientspresent, it's usually more in
women than men. Um , so inwomen it's usually presents
with every, with the , thesymptoms we mentioned, you
know, skin joints and thekidneys. In men, it
(08:49):
interestingly presents usuallyin internal organs. Ah . So a
lot of
Speaker 2 (08:52):
Times without the skin stuff,
Speaker 3 (08:53):
Without the skin stuff, a lot of times, times
they're in the kidney clinic,they biopsy , uh, you know, the
kidney and they find lupusnephritis and oh , you have
lupus and then we see them.
They could be just the kidneysor they could have a little bit
of symptoms. So there's also adifference in how it presents
between a gender , uh, in thatsense. And
Speaker 2 (09:09):
It's younger people too, right?
Speaker 3 (09:11):
It's young, correct.
It's usually childbearing age,you know, 18 to 44. But yes,
classically patients presentmostly 'cause they have joint
pain and rashes and mouthsores. But as I said, sometimes
it presents in the internalorgan without the other
symptoms, which makes it moreconfusing and challenging to
diagnose. How
Speaker 2 (09:30):
Common is lupus?
Speaker 3 (09:32):
Yeah , so lupus , uh, globally, it's about , uh,
44 persons per hundred thousandin the United States, about 72
per hundred thousand. The CDCestimates about 204,000 people
in the US uh, who have lupus in2024. So
Speaker 2 (09:45):
It's not particularly common, but that's
not rare. Correct.
Speaker 3 (09:48):
Um, those
Speaker 2 (09:49):
Are two different things. Correct. Some diseases
are very, very rare. You mightsee 'em once in your career,
whereas you see lupus all thetime. Correct.
Speaker 3 (09:57):
In rheumatology at , especially in our, in our
hospital safety net hospital,we see a lot of lupus patients
in our clinic right
Speaker 2 (10:03):
Now . Yeah . That's not in the general population.
That's not
Speaker 3 (10:05):
General population.
But , but , but
Speaker 2 (10:06):
It is something that is not, it's not like this
thing you're never gonna see inyour lifetime. It's uh , it's
not common, but it's actually,it's
Speaker 3 (10:13):
Around. I agree.
Speaker 2 (10:14):
Um, what about family history? Does that
matter?
Speaker 3 (10:16):
Yes. Family history matters. If patients have
family history of lupus , uh,they're at higher risk of
getting , uh, lupus for sure.
So
Speaker 2 (10:24):
Let's talk about somebody coming in to see you.
They're in your rheumatologyclinic. Maybe they've had some
, uh, these symptoms we've beentalking about. They saw their
primary care person and theysaid, this sounds like
something more than just alittle, you know , joint pain.
I'm gonna send you to therheumatologist. When they get
to see you, how do you diagnoseit?
Speaker 3 (10:41):
So one, we take a lot of history like as we were
talking, so we have to ask alot of questions because
there's so many symptoms areinvolved. So a lot of good
history taking. And after we doa very thorough history taking,
then we examine to see do wefeel swelling in the joints? Do
we see a mouth sore in theupper mouth? The classic lupus
mouth. We measure, we examinethe skin, do we see the classic
(11:03):
rash in the skin? We ma we lookat thecal. So a very thorough
physical exam. And then bloodand urine tests , uh, because
there are certain blood teststhat are treated with lupus,
Speaker 2 (11:13):
But they're not fully diagnostic. Are they? Is
there one blood test ? Correct. Can , isn't there just one
blood test? There's one bloodtest. Get it and tell me if I
have it or not. There's not,there's
Speaker 3 (11:21):
Not, there's highly sensitive tests. Okay. But to
diagnose lupus and in general,honestly to diagnose rheumatic
disease, you have to have twothings. You have to have
serologies or blood tests. Yes.
And you have to have thephysical exam and the history.
It's the combination of thefindings by history taking and
physical exam and the test thatgive you the diagnosis.
Speaker 2 (11:40):
So it's not just a blood test that any old doctor
can do. You need the bloodtests . You need the physical
exam . And you need a smartrheumatologist
Speaker 3 (11:46):
Basically. Yes.
Speaker 2 (11:47):
Think you're kind of a smart guy. I think you're
kind of a smart guy . What ,what about um, x-rays?
Speaker 3 (11:52):
Uh, x-rays, you know, x-rays can be helpful
because patients with lupus canhave arthritis. Sometimes we
get x-rays of the hands becauseit can help differentiate that
the patient does not haverheumatoid arthritis. Now,
interestingly, because again,it's autoimmune disease, some
patients have two autoimmunediseases. Some, some patients
we find they have lupus andthen we do x-ray. They actually
(12:13):
have also rheumatoid arthritis.
Mm-hmm . So we call it tolupus. Okay. So patients have
both lupus,
Speaker 2 (12:18):
I can't yr like that, roha
Speaker 3 (12:20):
So, but x-rays are helpful but not, they're
helpful to exclude other, otherdiseases that are present with
lupus, but not for lupus perse. If that makes sense. I
Speaker 2 (12:28):
Think I know the answer to this, but how
important is it to diagnose itearly?
Speaker 3 (12:32):
Yes. Uh, lupus is very important to diagnose it
early because if we diagnose itearly, there are some
medications and interventionswe can do that limits its
progression or decreases therisk of it progressing to
involve internal organs. 'causethe challenge of lupus is when
it's in the skin and the joint,it's bothersome to the patient.
Absolutely. And it's, it'sbothersome and we can treat it.
(12:52):
But once it's involved , theinternal organs becomes more
challenging and rarely,sometimes life threatening or
organ threatening, especiallyfor the kidneys. So a lot of
patients who develop lupusnephritis might end up on
dialysis or ultimately needkidney transplant. So the
importance of early diagnosisis early intervention to reduce
the risk of progression ofinternal organ involvement. So
Speaker 2 (13:11):
We're gonna take a short break. I'm talking with
Dr. Rahad Nasser . He heads upthe rheumatology division at
Hennepin Healthcare and is thesmartest guy I know. When we
come back, we'll talk abouttreatment options for lupus and
what else you need to knowabout this disease. Stick
around, we'll be right back.
Speaker 4 (13:26):
When Hennepin Healthcare says we are here for
life, they mean here for you,your life and all that it
brings. Hennepin Healthcare hasa hospital HCMC and a network
of clinics both downtown andacross the west metro. They
provide all the primary careand specialty care you would
expect to find, but did youknow they also have services
like acupuncture andchiropractic care available at
(13:49):
many of their primary careclinics and at their
integrative health clinic indowntown Minneapolis. Learn
more@hennepinhealthcare.org.
Hennepin Healthcare is here foryou and here for life.
Speaker 2 (14:05):
And we're back talking about lupus with Dr.
Rahad Nasser . So Rahad , isthere anything you can do to
avoid this or is this justsomething you're destined to
get?
Speaker 3 (14:14):
Well, there are some , uh, preventative measures
that patients can do, but alsothese measures could be related
to general health. For example,smoking, you know , um, smoking
cessation. Avoiding smokingreduces the risk of patients
developing lupus. Now ofcourse, exercising and eating
healthy and sleeping well arealways things we encourage our
patients in general to do. Andthey do reduce the risk of
(14:35):
lupus. But as you know, or
Speaker 2 (14:37):
At least reduce your risks of symptoms if you do
have it correct.
Speaker 3 (14:41):
So you're right, if you , if the , if the healthy
lifestyle and avoided smokingeither reduces the risk of
having it and if the patientdevelop it, usually the
symptoms are milder. So it cancome in a milder form or delay
its progression. Now obviouslya lot of people do all these
right things and they stilldevelop severe lupus because of
that genetic predisposition wespoke about.
Speaker 2 (15:01):
So let's talk about treatment. What are the steps
you take when someone gets thediagnosis? So
Speaker 3 (15:05):
The first thing we do when we diagnose someone
with lupus, everybody has to beon a medication called
hydroxychloroquine orPlaquenil. At least we try it
for everybody. We offer it foreverybody, we counsel it for
everybody
Speaker 2 (15:16):
Because it's the first thing you use.
Speaker 3 (15:17):
It's the first thing you use. Because
hydroxychloroquine, even if itdoesn't help the symptoms in
the long term , it showed , uh,it , it was very beneficial in
reducing the risk of developinglupus in your internal, in the
patient's internal organs.
People who tookhydroxychloroquine versus who
did not. And had lupus livedlonger, had less lupus flares,
had less heart attacks andstrokes, cardiovascular events.
(15:38):
So it's a very beneficialmedication in the long term .
So
Speaker 2 (15:41):
Everybody should be on hydroxychloroquine if they
tolerate has lupus. Correct .
Now many listeners mightremember that drug made a big
splash about five years ago.
Yes.
hydroxychloroquine became partof everybody's daily vocabulary
because there was this miff ,I'm gonna go with Miff that it
(16:02):
treated COVID , uh, but you'vebeen using it for a much longer
period of time for a differentreason. Right. I just want to
clarify.
Speaker 3 (16:09):
Yes.
Hydroxychloroquine has beenused for lupus for a long time.
We use at a low safe dose andmost patients tolerated. And
it's, it's a , it's a veryimportant medication in lupus
to try. Obviously there's aminority of patient lupus who
don't tolerate the medicine, sowe stop it. But if a patient
has lupus, they have to atleast have tried to take this
Speaker 2 (16:26):
Medicine. Okay, so what's next after that? Yes .
Because that one's an oldmedicine. Correct.
Speaker 3 (16:30):
Then , uh, as part of the old medicines, the
interesting part of lupus iswhich organ it is involving.
You use a medication for it. Soif it's involving the skin and
the joints, it's a set ofmedications. If it's involving
an internal organ like kidneysor lungs or heart or the brain,
it's another set ofmedications. Now , uh, the old
school medication we use is amedicine called methotrexate,
which helps skin and jointdisease. We've used
(16:51):
azathioprine, another oldschool medicine that helps skin
and joint disease. Now, if thekidneys are involved, we use a
medicine called mycophenolatemofetil or even a form of
chemotherapy cyclophosphamidethat can help the kidneys. And
Speaker 2 (17:03):
None of those are advertised on tv?
Speaker 3 (17:06):
No , they're not.
But they're solid.
Speaker 2 (17:07):
But so , so those, that's why that's kind of why I
call 'em the old school onesbecause about two thirds of TV
commercials for medicationssay, ask your rheumatologist if
yes , blah, blah , blah isright for you. Well you're a
rheumatologist. So what are thenew school
Speaker 3 (17:22):
Ones? Yes . So for the new uh , medications , uh,
biologics, we have twobiologics for lupus. Uh, one is
called benlysta or belimumab.
It reduces B cells , a type ofwhite blood cells. And the
other one is called, it's a newmedicine that just recently got
FDA approved , it's called salo, which , um, blocks the
interferon pathway. And uh, weuse these medications for skin
(17:44):
joint , uh, disease. And I'llhave to say the , the latest
medication salo has been veryeffective , uh, in lupus
medication. And it was acelebration neuro rheumatology
community when thesemedications came up . 'cause
these are the first FDAapproved medications for lupus
for years and decades, we didnot have anything that was FDA
approved , uh, except thehydroxychloroquine.
Speaker 2 (18:02):
Everything else was, it was you were using
medications designed forsomething else
Speaker 3 (18:07):
Off-label by experience of , I don think I
knew that. Yeah. So the newbiologics, they've,
Speaker 2 (18:12):
They
Speaker 3 (18:12):
Actually approved for lupus? Yes. And I have to
say , uh, they're actually moreeffective. We have more
medications to offer patientsthan previous years to help
with their lupus.
Speaker 2 (18:20):
Before I get off on medications, I wanna talk about
one that many people have heardof Prednisone. When should a
patient with lupus be takingprednisone?
Speaker 3 (18:27):
Yes. So patients with lupus, we do start them on
prednisone. Now, again, in thepast, before all these meds, a
lot of patients were onprednisone, high doses for a
long time
Speaker 2 (18:36):
Now with side effects, Melissa , as long as
your arm. Yeah , yeah .
Speaker 3 (18:39):
But now prednisone, we do start patients on
prednisone for lupus. But nowwe lower the dose, we taper it
down to a reasonable dose oreven to zero in some situations
with the new medications. But alot of patients with lupus are
still on low dose, like fivemilligrams of prednisone
Speaker 2 (18:54):
Because it's an inflammatory condition. It's ,
and there's no betteranti-inflammatory than
prednisone,
Speaker 3 (18:58):
Than prednisone.
Yeah . So prednisone still workand we try to manage the side
effects around it or keep it ata low dose. The other thing
I'll mention is we do screenfor vitamin D, 'cause vitamin D
deficiency. We try to replenishvitamin D , uh, because it
decreases risk of , uh, lupusflareups and might help with
some of the patient's symptomslike fatigue particularly. But
again, it's not like very clearit'll help. But it's something
(19:19):
we do intervene to try to helpwith some of the symptoms.
Speaker 2 (19:23):
I wanna shift into talking about the impact on
people's lives. When you havea, a systemic condition, when I
say systemic, I mean it'stouching on all these organs of
your body. A systemic conditionthat is a chronic condition
that we manage. I'm gonna , I'mgonna go out on a limb and say
that we don't have a cure forin lupus case, right?
Speaker 3 (19:41):
Correct. We do not have a cure for lupus. We have
medicines that suppress theimmune system enough so it
doesn't attack our own body andcause trouble.
Speaker 2 (19:49):
So let's talk about the impact that might have on
someone's life. Um , depending,you know, you , it could be any
one of these organs, but a lotof these things aren't visible
to other people and yet peopleare living with this every day
. Can you think of how in yourpatients, how living with lupus
can affect their lives?
Speaker 3 (20:05):
It's very hard.
Living with lupus is very hardfor, for multiple reasons. One,
it's a chronic disease that forwhich there's no cure. There's
these medications that keep itin remission keeps the immune
system for not flaring up andattacking the body. And so
these medications also havepotential side effects. So they
require a lot of monitoring, alot of clinic visits, a lot of
lab testing. And then sometimesyou have to go through trial
(20:26):
and error of medications tillyou get the right medication .
Sometimes it takes a year toget the patient on medicine
that they tolerate and worksfor their disease. So there is
the chronicity of the diseaseand the , the disease itself is
complicated and requires thesemedications that require a lot
of monitoring, a lot of clinicvisits. So it's a lot of stress
on the person just dealing withthe disease. Also, patients
with lupus mentioned they havea, a lot of fatigue. A lot of
(20:48):
pain, and then a lot of brainfog, difficulty finding words,
memory issues. And so a lot oftimes they are struggling in
their workplace or with theirfamily and people might not
understand what is going on.
And I've seen a lot of patientswho go on disability because of
lupus. 'cause they cannotfunction even mentally, not
just physically. So it's adisease that can stress both
(21:10):
the mental state and thephysical state and they cannot
perform as they used to attheir workplace.
Speaker 2 (21:15):
Yeah , I won't say her name, but I have a good
friend who's a , a brilliant,intelligent, smart physician
who has lupus. And it'schallenging to get through a
day with things that peoplecan't see with fatigue and pain
and that brain fog that you'retalking about. Absolutely . And
so you do and and , and peopledon't understand , uh, because
they can't see that it , it ,it , there's no nothing that
(21:36):
the casual observer, but shewould probably echo what you
just said, that sometimes it'svery hard to get through your
day. Uh, um, and , and it canbe disabling
Speaker 3 (21:45):
Absolutely mentally and then energy wise , you
know, a a little bit of effortin lupus patient can cause a
lot of fatigue and requires alot of rest for the body to to,
to get that energy back towhere it should be so that they
can function. Talk about
Speaker 2 (21:57):
The future. We've now got some medicines that are
specifically FDA approved forlupus. What do you see down the
road?
Speaker 3 (22:04):
Yeah , so for the future, there are many
medications right now in thepipeline we call like that are
on studies to try to controllupus better. Um, as I
mentioned, the recent medicinesof nlo is a breakthrough. I
think by experience, especiallywith the latest rheumatology
conferences. In addition to thestudies and the ads , the
experienced by rheumatologists, we're seeing good response
with this medicine anecdotally.
(22:24):
But there are many medicationin the pipeline that promise to
keep this disease in remission.
We don't have cures again, wehave medicines that suppress
the immune system.
Speaker 2 (22:32):
A cure would've to be, would've to go after the
genetic component, wouldn't it?
Correct.
Speaker 3 (22:36):
It would be like maybe a gene therapy in the
future. The other thing in thefuture that can help us to
avoid the trial and error ofmedicine, if there is like a
genetic testing that tells usthis patient has this type of
lupus and respond to thismedicine, instead of trying
four or five medication tillyou reach the medication that
will help. This is it. You
Speaker 2 (22:53):
Get it right the first time with all that trial
and error. Yeah. And the
Speaker 3 (22:56):
Challenge of these medicines, each one takes about
three months to try to see ifit works. It's not like a
medicine you try for a week andsay, yep , it worked for my
lupus. You have to take it forthree months before you
considered it failed. 'causesome patients it takes three
months on the medicine to calmthat part of the immune system
that is hyperactive and causingtrouble. So if
Speaker 2 (23:12):
You knew ahead of time medicine A is likely to be
more helpful for your style oflupus than medicine B, you
would know which one to useright from the beginning.
Speaker 3 (23:20):
That would be absolute dream for a
Speaker 2 (23:23):
Rheumatologist .
Yeah, I'll bet that'd be good.
Speaker 3 (23:23):
And for the patients. Yeah.
Speaker 2 (23:25):
Yeah,
Speaker 3 (23:25):
Absolutely.
Speaker 2 (23:26):
Lupus, that's a disease that we've been talking
about with Dr. Awad Nasser, arheumatologist and good friend
of mine here at HennepinHealthcare. If you have , um,
concerns about rheumatologicdiseases, whether it be lupus
or any of the other ones , um,that we mentioned earlier,
whether it be rheumatoidarthritis or maybe it's about
gout, you don't get a betterset of rheumatology colleagues
than you do at here at HennepinHealthcare in downtown
(23:47):
Minneapolis. Okay. If you couldleave us with one or two things
for people to take home aboutlupus, what would they be?
Speaker 3 (23:54):
One, you know, my experience with patient with
lupus, they need a lot ofpsychosocial support. So if you
know someone who has lupus,please try to help them as much
as you can, support themsocially, be very patient with
them and try to understandwhere they're coming from. It's
hard to see pain, fatigue andbrain fog. Mm-hmm
. But I've seen too many peoplego on disability because of
(24:14):
this disease. And I'm hoping inthe future we can find a really
good medicine and as I said,try to avoid the error and
trial and try to get thisdisease control so people can
live their lives as best as
Speaker 2 (24:25):
They can. I like that, the human aspect of it.
If you know somebody withsymptoms or you know somebody
with diagnosis, some, somesupport networks are a great
idea.
Speaker 3 (24:33):
Absolutely. We always try to encourage spouses
to come sometimes with thepatients so that they can
understand where we're comingfrom and where the patient's
coming from.
Speaker 2 (24:40):
Awa thanks for being on the show.
Speaker 3 (24:41):
Thank you for having me, David . It's
Speaker 2 (24:43):
Always pleasure.
It's been , it's been greathaving you. We've been talking
about Lupus with Dr. RahadNasser here at Hennepin
Healthcare from sunny downtownMinneapolis. I hope you've
picked up some new tips fromthis as I have. And I hope
you'll join us for our nextepisode in two weeks time. And
in the meantime, be healthy andbe well.
Speaker 1 (25:00):
Thanks for listening to the Healthy Matters podcast
with Dr. David Hilden . To findout more about the Healthy
Matters podcast or browse thearchive, visit healthy
matters.org. Got a question ora comment for the show, email
us at Healthy matters@hcme.orgor call 6 1 2 8 7 3 talk.
There's also a link in the shownotes. The Healthy Matters
(25:22):
Podcast is made possible byHennepin Healthcare in
Minneapolis, Minnesota, andengineered and produced by John
Lucas At highball Executiveproducers are Jonathan, CTO and
Christine Hill . Pleaseremember, we can only give
general medical advice duringthis program, and every case is
unique. We urge you to consultwith your physician if you have
a more serious or pressinghealth concern . Until next
(25:44):
time , be healthy and be well .
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