WEBVTT - Ep 116 It's never lupus (except this time) 0:00:00.320 --> 0:00:06.359 My name is Sarah Johnson, and I have had lupus 0:00:06.440 --> 0:00:10.040 since I was a teenager. When I was fourteen fifteen, 0:00:10.600 --> 0:00:15.200 I started having this series of fevers, and they were 0:00:15.600 --> 0:00:17.840 kind of a couple days a week once a month, 0:00:18.720 --> 0:00:21.360 and then all of a sudden, they were for a 0:00:21.360 --> 0:00:25.119 whole week each month, and then they just the time 0:00:25.160 --> 0:00:28.800 in between them started getting smaller and smaller. I couldn't 0:00:28.800 --> 0:00:31.840 find any source of infection or reason that I would 0:00:31.840 --> 0:00:36.600 be having any fevers. For some reason, these fevers would 0:00:36.640 --> 0:00:39.880 get extremely high in like one O two, one oh three. 0:00:40.400 --> 0:00:43.400 I would be really nauseous. I wasn't able to eat. 0:00:43.880 --> 0:00:46.360 I wasn't really able to keep food down or liquid down, 0:00:47.120 --> 0:00:50.040 and I ate a lot of popsicles because it was 0:00:50.080 --> 0:00:51.960 the only thing that I could eat for a long time. 0:00:52.560 --> 0:00:55.320 With these fevers would come a lot of soreness. It 0:00:55.360 --> 0:00:58.400 was difficult to get up and walk around, especially in 0:00:58.400 --> 0:01:00.520 my ankles and my knees and my hip. It was 0:01:00.600 --> 0:01:04.240 uncomfortable to sleep. After a while, it just had been 0:01:04.440 --> 0:01:07.520 months of this type of back and forth fevering, not 0:01:07.600 --> 0:01:10.680 being able to keep a lot down, and the fevers 0:01:10.720 --> 0:01:12.640 got high enough and I got weak enough that I 0:01:12.680 --> 0:01:14.080 had to go to the hospital and I stayed in 0:01:14.120 --> 0:01:17.960 the hospital for probably about two months. So I was 0:01:18.000 --> 0:01:20.720 around fifteen at this time, so you know, leaving school 0:01:20.840 --> 0:01:23.880 at the age of fifteen it is extremely traumatic because 0:01:24.319 --> 0:01:25.240 your friends are. 0:01:25.120 --> 0:01:26.679 Pretty much the most important thing to you. 0:01:27.360 --> 0:01:29.959 So going into the hospital, I had to start fluids, 0:01:30.440 --> 0:01:33.039 and this was basically just to get me up to 0:01:33.120 --> 0:01:36.399 a baseline where I felt semi normal again. And then 0:01:36.480 --> 0:01:39.640 with those fluids, I had too many fluids. I had 0:01:39.680 --> 0:01:43.000 pleurisy in my lungs, which is inflammation of the tissue 0:01:43.000 --> 0:01:45.000 around your lungs. So then I had a really difficult 0:01:45.000 --> 0:01:48.840 time breathing and they had to help drain fluids out 0:01:48.880 --> 0:01:51.080 of my lungs and give me LASiS to help me 0:01:51.400 --> 0:01:54.200 kind of shed that fluid. So that was kind of 0:01:54.200 --> 0:01:57.600 the first little bit of my introduction to whatever we 0:01:57.640 --> 0:01:59.800 thought was going on with my body. At the time, 0:02:00.000 --> 0:02:04.800 I didn't know anything about lupus. And at the hospital 0:02:04.800 --> 0:02:07.240 I was at the Children's hospital, they did a lot 0:02:07.240 --> 0:02:10.000 of different tests. They tested me for all sorts of 0:02:10.000 --> 0:02:16.400 different blood disorders, lime disease, rocky mountains, spotted fever, if 0:02:16.440 --> 0:02:18.160 I had a spinal tap to see if I had 0:02:18.200 --> 0:02:21.840 some sort of infection, really anything that you could think of. 0:02:21.880 --> 0:02:25.040 I was having blood drawn all the time, and really 0:02:25.080 --> 0:02:28.000 it didn't It wasn't until I started seeing a rheumatologist 0:02:28.080 --> 0:02:31.919 at the hospital that she started suggesting that it could 0:02:31.919 --> 0:02:37.000 be something called adult onset Stills disease or juvenile Stills disease, 0:02:37.040 --> 0:02:39.880 where you have sometimes when I would have these fevers, 0:02:39.919 --> 0:02:43.519 I would have this under this skin, not quite a rash, 0:02:43.560 --> 0:02:46.080 but it was like a modeling where almost when you 0:02:46.120 --> 0:02:48.520 get a bruise and you have like a speckley red 0:02:48.760 --> 0:02:51.119 under your skin. So I'd have that on the back 0:02:51.160 --> 0:02:54.360 of my upper arms and on the inside of my knees, 0:02:54.440 --> 0:02:57.720 and when I would when I would shower actually is 0:02:57.720 --> 0:03:00.560 when they would get most prominent, so almost like when 0:03:00.600 --> 0:03:04.600 there was heat and kind of inflammation in those areas, 0:03:05.280 --> 0:03:07.400 and so she noticed that as a sign that, oh, 0:03:07.480 --> 0:03:12.840 that's sometimes related to this rheumatoid condition, so maybe that's 0:03:12.960 --> 0:03:15.520 what's going on, and so kind of that was just 0:03:15.560 --> 0:03:18.800 my diagnosis for a long time, and really the only 0:03:18.919 --> 0:03:21.119 way I got better was by staying in the hospital, 0:03:21.200 --> 0:03:25.120 getting tons of fluids and eventually starting a course of 0:03:25.240 --> 0:03:29.200 steroids or pread and zone and taking that for a very, 0:03:29.639 --> 0:03:32.920 very very long time. I think I was probably on 0:03:34.000 --> 0:03:39.200 sixty milligrams or more of premazone for six months to 0:03:39.280 --> 0:03:42.520 a year, and based on all the things that had 0:03:42.520 --> 0:03:45.200 happened to me in the hospital, the stress to my 0:03:45.280 --> 0:03:48.480 body and my immune system for that long, I remember 0:03:48.560 --> 0:03:51.440 having like on my sixteenth birthday, I have pictures of 0:03:51.440 --> 0:03:54.840 me with different colored roots in my hair because my 0:03:54.880 --> 0:03:58.560 hair started growing a different color. So anyways, really that 0:03:58.680 --> 0:04:01.080 time just kind of passed, and then after all of 0:04:01.080 --> 0:04:03.760 this course of medication, I got a lot better. I 0:04:03.760 --> 0:04:06.240 would say the biggest thing that I can remember coming 0:04:06.280 --> 0:04:09.960 out of that was I had very very intense anxiety 0:04:10.040 --> 0:04:13.640 for a long time after that, for a few years, 0:04:14.280 --> 0:04:16.720 and I was fortunate enough to see a therapist who 0:04:16.800 --> 0:04:20.440 focused on chronic diseases, especially with people like my age, 0:04:21.400 --> 0:04:24.000 and just learn how to use a lot of coping 0:04:24.040 --> 0:04:26.719 skills to not be really scared all the time, because 0:04:26.720 --> 0:04:28.360 when you have something like this that you don't know 0:04:28.400 --> 0:04:31.640 where it came from or how it was spurred, you 0:04:31.720 --> 0:04:34.760 never know when it's going to happen again, or what's 0:04:34.800 --> 0:04:36.920 going to cause it, or what you're doing that's going 0:04:37.000 --> 0:04:40.480 to make it harder for you. One big thing is 0:04:40.520 --> 0:04:43.839 stress in my life was very stressful in my preteen years. 0:04:43.920 --> 0:04:45.960 There's a lot going on in my life and at home, 0:04:46.240 --> 0:04:50.520 and you're told to manage your stress, but when you're 0:04:50.920 --> 0:04:54.720 fifteen sixteen, it seems almost impossible. So that took me 0:04:54.760 --> 0:04:58.200 a long time to adjust. But now at thirty five 0:04:58.279 --> 0:05:01.040 years old, I feel like I'm doing a lot better 0:05:01.080 --> 0:05:04.200 with it. So from fifteen sixteen, I didn't really have 0:05:04.240 --> 0:05:07.880 any issues with this. Again, I think probably until I 0:05:07.920 --> 0:05:11.680 was around twenty one. I probably treated my body pretty 0:05:11.680 --> 0:05:14.000 poorly in my twenties, so I just assumed that whatever 0:05:14.120 --> 0:05:16.840 was going on with me was just me being run 0:05:16.880 --> 0:05:21.320 down and tired and started getting fevers again and then 0:05:21.520 --> 0:05:24.240 having a lot of the same issues. So I found 0:05:24.279 --> 0:05:28.039 a new roomatologist at that time basically said, oh, it's 0:05:28.080 --> 0:05:30.280 just this stills disease. You're going to grow out of it. 0:05:30.480 --> 0:05:33.159 Don't worry about it. So I moved on to another 0:05:33.240 --> 0:05:38.000 rheumatologist because I did not believe that whatsoever, And they 0:05:38.480 --> 0:05:40.680 looked at a lot of my past history which the 0:05:40.760 --> 0:05:44.080 previous roomatologists had not done, and said, you know, a 0:05:44.080 --> 0:05:46.520 lot of this really looks like lupus. There's this new 0:05:46.560 --> 0:05:48.560 test out there now where we can search for this 0:05:48.839 --> 0:05:51.039 essentially if you're more likely to have lupus or not, 0:05:51.600 --> 0:05:54.719 and it came back positive. So this is the best 0:05:54.760 --> 0:05:57.200 we can do at trying to figure out if it's 0:05:57.200 --> 0:05:59.680 potentially lupus. But at the end of the day, most 0:05:59.680 --> 0:06:02.040 of the trees treatments for this type of illness are 0:06:02.080 --> 0:06:06.280 the same. So I started hydroxychloroquin or plaquino when I 0:06:06.320 --> 0:06:08.240 was around twenty one, and I've been on it for 0:06:08.640 --> 0:06:12.240 fifteen years now pretty much with very few. 0:06:12.360 --> 0:06:13.520 Issues or side effects. 0:06:14.000 --> 0:06:17.440 I'm at a stage with my loopus where I really 0:06:17.560 --> 0:06:20.080 only seemed to have a flare up every three years 0:06:20.200 --> 0:06:23.200 or so. Seemed like I had a flare up in 0:06:23.240 --> 0:06:27.120 twenty fourteen, twenty fifteen, then again in twenty seventeen, twenty eighteen, 0:06:27.680 --> 0:06:31.279 and then again twenty twenty twenty twenty one, which was 0:06:31.320 --> 0:06:33.719 a very strange time to have a flare up. A 0:06:34.000 --> 0:06:36.520 strange but also very positive time to have a flare 0:06:36.560 --> 0:06:39.320 up because I didn't have anywhere that I had to go, 0:06:39.600 --> 0:06:41.880 you know, I really could focus on taking care of myself. 0:06:41.920 --> 0:06:44.359 I spent a lot of time in my garden. But 0:06:44.520 --> 0:06:48.440 it was a really brutal flare up. The challenge for 0:06:48.560 --> 0:06:51.640 me has been. When you move and you see a 0:06:51.640 --> 0:06:54.039 different rheumatologist, you kind of have to explain your whole 0:06:54.080 --> 0:06:56.520 story to them over and over again. So for anyone 0:06:56.560 --> 0:06:59.720 who has this or has anything similar, being your own 0:06:59.720 --> 0:07:03.520 ad and keeping really good records is crucial because when 0:07:03.520 --> 0:07:05.680 I had this issue again in twenty twenty, I had 0:07:05.680 --> 0:07:08.880 to find a new doctor. I had different insurance at 0:07:08.880 --> 0:07:13.000 that time, and when you're well, you don't think to 0:07:13.040 --> 0:07:15.440 deal with any of this stuff. They came in handy 0:07:15.800 --> 0:07:17.560 when I was sick because I could take all this 0:07:17.640 --> 0:07:20.160 information to my new doctor in twenty twenty and say, 0:07:20.160 --> 0:07:23.640 this feels similar but different, and here's all the information 0:07:23.680 --> 0:07:27.040 that I have. So I stayed on premozone for most 0:07:27.080 --> 0:07:28.960 of the rest of the year, and I finally started 0:07:28.960 --> 0:07:33.520 feeling a lot better. And then phasing out of prednozone 0:07:33.600 --> 0:07:36.040 was equally as difficult, I feel like as going onto 0:07:36.040 --> 0:07:40.720 the prednizone because your body then kind of adjusts to 0:07:40.840 --> 0:07:47.520 this elevated level of incredibleness, which is feeling amazing. So 0:07:48.400 --> 0:07:52.680 since then I've been pretty well. Like I said, I 0:07:52.720 --> 0:07:55.720 was fortunate that I didn't have a lot requiring my 0:07:55.800 --> 0:07:58.160 attention that year. I didn't need to do field work 0:07:58.200 --> 0:08:02.120 for grad school. For a lot of people, those are 0:08:02.280 --> 0:08:04.920 very limiting factors to a disease like lupus, where you 0:08:05.120 --> 0:08:08.800 just can't expect what your schedule is going to look 0:08:08.840 --> 0:08:11.920 like or be able to anticipate these events in your 0:08:11.960 --> 0:08:15.440 life that may need to completely be canceled or changed 0:08:15.520 --> 0:08:18.520 because you don't know when or where you're going to 0:08:18.600 --> 0:08:23.080 have a flare up. Personally, I've chosen probably one of 0:08:23.080 --> 0:08:25.120 the worst fields to be in for someone with a 0:08:25.200 --> 0:08:29.120 chronic inflammatory disorder. I'm a field biologist. I spend a 0:08:29.120 --> 0:08:33.880 lot of time outside in the sun, physically active, but 0:08:34.400 --> 0:08:36.600 I love it and it's what matters to me. So 0:08:36.640 --> 0:08:39.760 I've over the years found ways to have a more 0:08:39.800 --> 0:08:42.480 flexible schedule or a schedule that's more adapted to what 0:08:42.520 --> 0:08:46.360 I need and when I'm capable. I also take really 0:08:46.360 --> 0:08:49.520 good care of myself in terms of wearing protective clothing. 0:08:49.600 --> 0:08:52.440 I treat all of my clothing with sunnguard, and I 0:08:52.480 --> 0:08:55.600 wear long sleeves, and I wear big hats, and I 0:08:55.640 --> 0:08:58.520 wear a ton of sunscreen and so all of those 0:08:58.559 --> 0:09:03.320 things in addition to therapy and you know, making sure 0:09:03.320 --> 0:09:05.679 I keep my stress at a good level and trying 0:09:05.679 --> 0:09:09.400 to get a lot of sleep. So yeah, I guess 0:09:09.480 --> 0:09:12.880 that's most of my life with lucas. I think that 0:09:13.840 --> 0:09:18.040 I'm very fortunate to have whatever version of this chronic 0:09:18.080 --> 0:09:20.720 disease that I have, because I can lead a pretty 0:09:20.720 --> 0:09:24.040 normal life. It's tough when I'm in a flare up, 0:09:24.440 --> 0:09:28.000 but I do feel like over time, I've built this 0:09:29.000 --> 0:09:32.760 kind of anthology of wisdom and knowledge that has helped 0:09:32.800 --> 0:09:36.600 me manage it so much better than I could have 0:09:36.640 --> 0:09:39.600 ever dreamed of when I was fifteen and things really 0:09:39.640 --> 0:09:40.680 felt terrible. 0:10:26.920 --> 0:10:30.600 Wow, like wow, thank you, Sarah, thank you so much 0:10:30.720 --> 0:10:32.080 for sharing your story with us. 0:10:32.360 --> 0:10:37.480 Yeah, Sarah, thank you that, I mean thanks for having 0:10:37.520 --> 0:10:39.960 to go through that by telling us this story and 0:10:40.000 --> 0:10:44.160 then sharing it with everyone. Just yeah, yeah, thanks, We're 0:10:44.200 --> 0:10:48.640 really grateful. Hi. I'm Erin Welsh and I'm Erin Almond 0:10:48.720 --> 0:10:51.480 Updike And this is this podcast will kill. 0:10:51.320 --> 0:10:55.160 You And today if you haven't figured it out, we're 0:10:55.200 --> 0:10:57.000 talking about lupus. 0:10:57.360 --> 0:11:01.520 We are. This is a okay, this is probably the 0:11:01.760 --> 0:11:05.000 what is this our sixth episode? So the sixth time 0:11:05.080 --> 0:11:07.400 this season that we have said it's gonna be a 0:11:07.400 --> 0:11:11.560 big one. Yeah, and we've been right in every case. 0:11:13.000 --> 0:11:15.480 There's a lot to cover here, So should we get 0:11:15.559 --> 0:11:19.840 straight down to business? We should. It's quarantiny time. Excellent. 0:11:19.880 --> 0:11:25.000 What are we drinking this week? We're drinking the Butterfly smash. 0:11:25.400 --> 0:11:27.720 Love this why is the favorite? 0:11:29.040 --> 0:11:34.280 So shout out Sarah love this quarantiny title. She came 0:11:34.400 --> 0:11:39.320 up with it because she's amazing. It's butterfly smash because 0:11:39.480 --> 0:11:43.360 there is a very typical rash that you can see 0:11:43.480 --> 0:11:47.920 in lupus that is often called a butterfly rash. 0:11:47.160 --> 0:11:51.400 But it's a great it's a really good name, it 0:11:51.480 --> 0:11:54.520 really is. And a good drink erin what's in it? Yeah, 0:11:54.559 --> 0:11:59.160 So this is actually a listener suggestion, So thank you 0:11:59.320 --> 0:12:03.760 so much for sending this over because it is delicious. 0:12:04.440 --> 0:12:08.559 So it is a bourbon fizz, so bourbon and then 0:12:08.679 --> 0:12:13.840 strawberry puree and lime juice topped with ginger beer. So refreshing, 0:12:14.080 --> 0:12:16.680 so delightful, so so so so yum. 0:12:17.720 --> 0:12:20.440 And we'll post the full recipe for that quarantine as 0:12:20.480 --> 0:12:23.319 well as our non alcoholic plasy but Rita on our website. 0:12:23.320 --> 0:12:25.520 This podcast will kill you dot com and all of 0:12:25.520 --> 0:12:29.960 our visual media channels. We certainly will. Yeah. On our 0:12:30.000 --> 0:12:33.800 website you can find the things that you can always 0:12:33.840 --> 0:12:38.400 find there transcripts, the sources for each and every one 0:12:38.480 --> 0:12:43.120 of our episodes. We've got links to bookshop dot org, 0:12:43.200 --> 0:12:46.760 to goodreads list to music by Bloodmobile. Just go check 0:12:46.800 --> 0:12:48.880 it out. It's great everything. Yeah. Great. 0:12:49.559 --> 0:12:52.160 We do have a small piece of business to announce 0:12:52.240 --> 0:12:55.800 before we get into the content of this episode, and 0:12:55.840 --> 0:12:58.760 that is that you will notice a slight schedule change 0:12:58.840 --> 0:13:02.720 coming up in our episode, really schedule because I Aaron 0:13:02.800 --> 0:13:06.760 Almann Updike am having another baby and we'll be taking 0:13:06.800 --> 0:13:09.080 a leave of absence for a short time. 0:13:11.160 --> 0:13:14.920 It's amazing. I'm super excited. It's going to be an adventure. 0:13:15.040 --> 0:13:18.800 But Aaron Welsh has covered because she's. 0:13:18.600 --> 0:13:21.280 Got tons of bonus episode content that's going to be 0:13:21.280 --> 0:13:22.600 filling in any gaps. 0:13:22.800 --> 0:13:25.360 So yeah, So episodes will be coming out every other week, 0:13:25.440 --> 0:13:28.480 but instead of one regular season episode every other week, 0:13:28.520 --> 0:13:32.000 it'll be regular season episode two weeks later, bonus episode 0:13:32.120 --> 0:13:35.199 two weeks later regular episode. And this is just for 0:13:35.280 --> 0:13:37.680 a short amount of time, so we'll be back to 0:13:37.760 --> 0:13:46.600 our regularly scheduled programming briefly, all right, Well, any other business, 0:13:46.840 --> 0:13:48.880 I don't think so. I think that we should get 0:13:48.880 --> 0:13:53.640 started on this massive topic. I can't wait right after 0:13:53.679 --> 0:13:54.200 this break. 0:14:27.280 --> 0:14:34.160 So lupus, or as it's more properly called, systemic lupus arithematosis, 0:14:36.960 --> 0:14:40.000 the first question that you may have listeners is what 0:14:40.160 --> 0:14:40.480 is this? 0:14:42.400 --> 0:14:44.880 And the truth of the matter is we still simply 0:14:44.920 --> 0:14:49.560 don't know. Will we have a better understanding forty minutes 0:14:49.600 --> 0:14:52.200 from now, Yeah, yeah, we will for sure for sure. 0:14:54.200 --> 0:14:56.000 But I want to start with a quote which I 0:14:56.040 --> 0:15:00.600 don't do very often, but I read a paper from 0:15:00.640 --> 0:15:03.640 like twenty years ago, was published in two thousand and three, 0:15:03.800 --> 0:15:07.240 and that really just highlighted how little we knew then 0:15:07.400 --> 0:15:10.240 about the path of physiology of lupus, and I was like, well, 0:15:10.280 --> 0:15:12.880 surely when I get to the more recent papers. So 0:15:13.000 --> 0:15:14.800 then there was a paper that came out in twenty 0:15:14.880 --> 0:15:19.320 nineteen in the Lancet that started off strong with this quote. 0:15:20.040 --> 0:15:27.080 Quote Systemic lupus arithematosis is not only the prototypic systemic 0:15:27.120 --> 0:15:31.760 autoimmune disease, but also one of the most heterogeneous illnesses 0:15:31.880 --> 0:15:33.160 treated by physicians. 0:15:33.600 --> 0:15:37.520 End quote. It doesn't really tell you much, doesn't. Nope, 0:15:37.560 --> 0:15:38.160 it doesn't. 0:15:38.240 --> 0:15:43.960 And also just like it really underscores just how okay 0:15:43.960 --> 0:15:46.280 we need to just keep going because it's going to 0:15:46.360 --> 0:15:50.520 be too much Okay, I am a little worried that 0:15:50.600 --> 0:15:54.240 for some people this biology section might feel very unsatisfying, 0:15:54.400 --> 0:15:57.000 But the truth is that that's because lupus is a 0:15:57.040 --> 0:16:00.760 disorder that we still just don't fully understand. And I 0:16:01.280 --> 0:16:05.480 really wonder if we will find in the years to 0:16:05.560 --> 0:16:09.320 come that what we now call loopus or even systemic 0:16:09.360 --> 0:16:14.400 lupus arithematosis, is actually this very very large umbrella under 0:16:14.480 --> 0:16:18.479 which we might have in the future many different disorders 0:16:18.680 --> 0:16:21.920 as we understand more of the genetics and everything that 0:16:22.040 --> 0:16:23.360 underpin this disease. 0:16:24.720 --> 0:16:26.720 But in any case, we will try our best. 0:16:26.880 --> 0:16:29.640 So what I'm going to do is first highlight some 0:16:29.680 --> 0:16:33.440 of the most common symptoms, which there are a lot, 0:16:34.440 --> 0:16:38.280 how we diagnose lupus, what we know so far about 0:16:38.320 --> 0:16:42.480 both the big picture, you know, risk factors and contributing factors, 0:16:42.560 --> 0:16:45.240 as well as the nitty gritty path of physiology of 0:16:45.240 --> 0:16:48.640 what's happening in our bodies in someone with lupus, and 0:16:48.680 --> 0:16:50.560 then at least a little bit about how it's treated 0:16:50.640 --> 0:16:53.400 or managed, which is a lot of ground to cover. So, 0:16:55.680 --> 0:16:58.200 like I said, already, lupus, which is how I'm going 0:16:58.240 --> 0:17:02.160 to refer to it from now on, is a chronic 0:17:03.120 --> 0:17:09.800 systemic autoimmune disease. There are, and I'll mention all of these, 0:17:09.920 --> 0:17:13.800 some other forms of lupus that are sometimes lumped within lupus, 0:17:13.800 --> 0:17:16.800 and sometimes they're very separated, and I'll at least mention 0:17:16.920 --> 0:17:19.880 all of them. But there is cutaneous loopus, which means 0:17:19.880 --> 0:17:24.040 that you might only have skin findings without any systemic symptoms. 0:17:24.960 --> 0:17:27.560 There is a drug induced lupus that is brought on 0:17:27.800 --> 0:17:31.320 by medications, but generally not something that turns into a 0:17:31.359 --> 0:17:36.159 chronic disease. It usually resolves with stopping that medication. And 0:17:36.160 --> 0:17:39.480 then there's also neonatal loopus, which can happen to infants 0:17:39.480 --> 0:17:41.720 that are born to people with lupus. 0:17:42.200 --> 0:17:43.040 Huh. 0:17:43.160 --> 0:17:47.280 But today our focus is sle systemic loopus. Henceforth, again 0:17:47.320 --> 0:17:51.360 I'm just gonna call loopus. And we have covered on 0:17:51.400 --> 0:17:54.760 this podcast a number of other autoimmune diseases in the past. 0:17:55.000 --> 0:17:58.160 We've talked about MS, We've talked about type one diabetes. 0:17:59.040 --> 0:18:04.239 But to refresh everyone, autoimmune simply means that one of 0:18:04.280 --> 0:18:09.119 the main pathologic drivers of a disease is the production 0:18:09.280 --> 0:18:14.760 of antibodies that are attacking one's self rather than only 0:18:14.800 --> 0:18:20.320 attacking non self. And this auto antibody as they're called 0:18:20.440 --> 0:18:24.560 production is associated with a whole bunch of other immune 0:18:24.600 --> 0:18:29.520 system dysregulation that can lead to inflammation and damage to 0:18:29.680 --> 0:18:32.560 various parts of the body. In the case of the 0:18:32.600 --> 0:18:36.280 other autoimmune diseases that we have covered on the podcast, 0:18:36.480 --> 0:18:40.280 for example, MS, it's predominantly just affecting our central nervous 0:18:40.359 --> 0:18:45.000 system right, destroying our nerve axon sheets. Type one diabetes 0:18:45.160 --> 0:18:48.879 is auto antibodies destroying the insulin producing cells of our pancreas. 0:18:50.200 --> 0:18:53.560 These are you can think of as like very targeted, 0:18:53.760 --> 0:18:58.040 localized autoimmune disorders. They're affecting a single organ or a 0:18:58.040 --> 0:19:03.480 single organ system. Lupus, on the other hand, is systemic. 0:19:04.200 --> 0:19:08.159 It does not discriminate, and it has the capacity to 0:19:08.280 --> 0:19:13.560 affect any and every organ or organ system or part 0:19:13.720 --> 0:19:17.159 of our body. And that is what makes it so 0:19:17.680 --> 0:19:24.360 incredibly difficult. It's not the only systemic autoimmune disease, rheumatoid arthritis, 0:19:24.560 --> 0:19:27.720 chogrin syndrome, there are a lot of others, but lupus 0:19:27.920 --> 0:19:31.960 is probably the most heterogeneous and difficult to get a 0:19:32.000 --> 0:19:34.600 handle on. So of course it's the first one that 0:19:34.640 --> 0:19:36.400 we're going to cover on this podcast. 0:19:36.880 --> 0:19:40.719 Uh, tell me what you mean by heterogeneous In this context. 0:19:40.520 --> 0:19:44.280 Let me tell you by going over the symptoms, that'll 0:19:44.280 --> 0:19:46.800 do it. Yeah, And that's really what I mean is 0:19:46.840 --> 0:19:50.000 that the way that this can present, both in terms 0:19:50.040 --> 0:19:52.920 of the symptoms and in terms of the laboratory findings 0:19:52.920 --> 0:19:57.159 that we see very a ton person to person. So 0:19:57.480 --> 0:20:01.040 one person's experience with lupus might be higherly different than 0:20:01.080 --> 0:20:02.920 another person's experience with lupus. 0:20:03.400 --> 0:20:05.440 Okay, So when it comes. 0:20:05.160 --> 0:20:08.360 To the symptoms, because of that, I can't give you, 0:20:08.400 --> 0:20:11.600 like I often do this timeline of events of what 0:20:11.720 --> 0:20:14.160 happens in terms of symptoms, like first we see this 0:20:14.280 --> 0:20:18.560 and then this, Because somebody with loopus can present with 0:20:18.720 --> 0:20:21.280 any or all of the symptoms that I'm going to 0:20:21.320 --> 0:20:25.040 go over. It's unlikely that someone would have all of 0:20:25.040 --> 0:20:28.560 these symptoms at once, but it is entirely possible that 0:20:28.600 --> 0:20:31.480 they could have all or nearly all of them throughout 0:20:31.520 --> 0:20:36.720 their lifetime at different times. So the diagnosis of lupus 0:20:36.800 --> 0:20:40.040 is really challenging. Because of that, it is easy to 0:20:40.240 --> 0:20:44.479 both under attribute symptoms, to not recognize symptoms as related 0:20:44.520 --> 0:20:48.200 to lupus, as well as over a tribute, especially if 0:20:48.200 --> 0:20:51.400 somebody has a previous diagnosis of lupus, to just assume 0:20:51.520 --> 0:20:55.879 that everything someone's experiencing is related only to lupus, like 0:20:56.280 --> 0:20:56.960 a la house. 0:20:58.560 --> 0:21:02.040 So how then is some thing determined to be over 0:21:02.600 --> 0:21:05.080 or under attributed, right, Like, how do you know that 0:21:05.119 --> 0:21:08.800 it's correctly attributed to lupus? Oh, Aaron, if I had 0:21:08.800 --> 0:21:11.320 an answer to that, we don't have any sort of 0:21:11.359 --> 0:21:14.640 cellular diagnostics, so we do for a lot of these. 0:21:14.680 --> 0:21:16.760 So let's get into what some of the most common 0:21:16.800 --> 0:21:21.640 symptoms are and then we can talk about kind of that. Okay, okay, Yeah, 0:21:21.800 --> 0:21:23.960 So one of the most common symptoms that we see 0:21:24.400 --> 0:21:28.760 is arthritis. Arthritis is a major symptom of loopus, with 0:21:28.840 --> 0:21:32.159 about eighty five percent of people with loopus having symptoms 0:21:32.200 --> 0:21:37.239 of inflammation and pain in the joints. Joint involvement is 0:21:37.280 --> 0:21:42.200 actually one of the most universal symptoms of systemic autoimmune diseases. 0:21:43.640 --> 0:21:47.439 Why our joints specifically are so susceptible to this type 0:21:47.440 --> 0:21:52.520 of autoimmune inflammation, we don't know, but they definitely are. 0:21:52.960 --> 0:21:56.639 So Arthritis pain in your joints, especially in the hands, 0:21:57.040 --> 0:21:59.639 in the wrists, but it could be any joint in 0:21:59.640 --> 0:22:04.160 your d higher body. That's one huge one. Then there 0:22:04.200 --> 0:22:10.440 are a whole host of skin manifestations, and these can 0:22:10.600 --> 0:22:13.439 vary widely. I'll talk about some of the most common ones. 0:22:14.720 --> 0:22:20.440 Many of these are brought on or exacerbated by exposure 0:22:20.560 --> 0:22:23.440 to the sun. So a new rash or a new 0:22:23.480 --> 0:22:26.960 skin finding that's brought on after sun exposure is something 0:22:27.000 --> 0:22:31.320 that might make someone think lupus. And as I mentioned 0:22:31.320 --> 0:22:34.600 early on, some of these skin findings are also found 0:22:34.680 --> 0:22:39.879 in people that have cutaneous lupus, arithematosis or cle That 0:22:40.160 --> 0:22:43.520 doesn't necessarily mean that they have any systemic symptoms of lupus, 0:22:44.760 --> 0:22:49.560 so it's it's a lot, but the skin involvement happens 0:22:49.600 --> 0:22:51.959 in again about seventy to eighty percent of people that 0:22:52.119 --> 0:22:57.600 have lupus systemic lupus, and they can be classified by 0:22:57.720 --> 0:23:01.520 how quickly they appear or how long they last. So 0:23:01.600 --> 0:23:07.000 there's some rashes like the malar rash or the butterfly rash. 0:23:07.359 --> 0:23:11.600 This is like a reddish, not very raised rash that 0:23:11.760 --> 0:23:15.000 goes across the nose and onto the cheeks and really 0:23:15.040 --> 0:23:17.520 looks kind of like a butterfly, like if your nose 0:23:17.640 --> 0:23:19.560 was the body of a butterfly, and then your cheeks 0:23:19.560 --> 0:23:23.200 are like the wings. And it doesn't usually go into 0:23:23.240 --> 0:23:29.760 the nasolabial folds like right, interesting, that's your smile lines. Yeah, 0:23:30.000 --> 0:23:32.040 so that's one type of rash that we can see, 0:23:32.160 --> 0:23:34.879 very often brought on by being in the sun or 0:23:34.880 --> 0:23:40.359 by sun exposure. Sometimes the skin findings might be ulcers 0:23:40.760 --> 0:23:45.120 in the mouth or other mucous membranes. You could have 0:23:45.400 --> 0:23:50.000 just disseminated like splotchy red bumps kind of all over, 0:23:51.119 --> 0:23:56.200 or a number of different discrete patches on the skin, 0:23:56.440 --> 0:24:02.640 especially on sun exposed areas, that look round like discoid 0:24:02.960 --> 0:24:06.760 is one very common finding. Maybe a little bit like 0:24:06.840 --> 0:24:10.520 a psoriasis plaque, so something that's like raised and kind 0:24:10.520 --> 0:24:14.840 of scaly. That's a common one. You could also have 0:24:15.119 --> 0:24:19.280 blisters that aren't very superficial but are kind of underneath 0:24:19.280 --> 0:24:23.240 that first layer of skin. There are a few other 0:24:23.280 --> 0:24:27.359 things that we might see. Leveto reticularis one of my 0:24:27.400 --> 0:24:32.040 favorite words. This is a lacy pattern of purple like 0:24:32.280 --> 0:24:35.360 modeling that you might see usually on the lower legs, 0:24:36.200 --> 0:24:40.240 or rainode syndrome, which is where in the cold, the 0:24:40.320 --> 0:24:42.960 tips of your fingers or your toes turn white or 0:24:42.960 --> 0:24:46.320 even blue or purple and it's incredibly painful. 0:24:47.640 --> 0:24:49.520 Those last two, the levito. 0:24:49.200 --> 0:24:53.159 Reticularis and the rain nods are related more to vasospasm 0:24:53.240 --> 0:24:57.200 of blood vessels, but you see those skin manifestations with them. 0:24:58.720 --> 0:25:01.960 And then we also can see hair loss or what's 0:25:02.000 --> 0:25:05.720 called non scarring alopecia, So in various patches you might 0:25:05.760 --> 0:25:09.040 have hair loss or sometimes kind of diffusely see that 0:25:09.080 --> 0:25:11.720 people are kind of losing a lot of hair that 0:25:11.840 --> 0:25:15.600 eventually we'll grow back. It's not causing scarring across the skin. 0:25:16.680 --> 0:25:18.960