TW: Medications, death, grieving, and I cry for like ten minutes. Yay?

I’ve talked a lot about arthritis. For nearly the last decade, it’s the bulk of the work I’ve done. On my other site, I’ve worked on not only talking about my own health but how we can improve healthcare systems. Today, though, let’s stick to arthritis facts since May is Arthritis Awareness Month.

Now, if you’ll excuse me, I have to go listen to Wine & Crime to cheer my sobbing ass up.

Arthritis links:

• https://www.arthritis.org/about-arthritis/understanding-arthritis/arthritis-statistics-facts.php
• https://www.arthritis.org/about-arthritis/understanding-arthritis/what-is-arthritis.php
• https://www.arthritis.org/about-arthritis/types/
• https://www.arthritis.org/living-with-arthritis/treatments/medication/drug-types/
• https://www.chronicsex.org/2017/10/sex-side-effects-medications/

Come see me in Milwaukee on the 10^th: https://www.toolshedtoys.com/class-hurts-so-good-how-pain-disorders-can-affect.html

Transcript

Welcome to the Chronic Sex Podcast! Chronic Sex talks about how self love, relationships, sex, and sexuality are all affected by chronic illness and disability. Although we’ll also touch on intersectionality, social justice, empathy, current events, and much, much more. Given the range of subject matter in this podcast, it is not suitable for those under the age of 18. And unless you have headphones, you probably shouldn’t be listening to us at work. My name’s Kirsten Schultz and I’m your host.  [Intro music fades in and out]

Hey everyone. Glad you could make it for this episode. Make time for this episode? That makes more sense, right? Um, I wanted to give a couple updates really quick. I was hoping to mix my episode with my friend Siren to put up today, but to be quite honest, I, I just, it’s been thunder storming here and my energy levels are shite so it hasn’t happened yet. It will happen. I promise it will happen, but I’m. Part of it is like my anxiety’s really high right now too and I know it’s gonna take a little bit to do and I just keep putting it off. I’m going to be honest. Um, it’s, it, it will be a really good episode, but like I would just suck at that right now. Anyway. Um, today I wanted to talk a little bit about a couple of updates and then, um, since it’s arthritis awareness month, talk a little bit more about arthritis and the different things that it does.

Um, but first, yeah, updates. So is the third today and um, this last Sunday, Wine & Crime had a live show in Minneapolis and I went and it was amazing, amazing, amazing, amazing. Um, there’s something really cool to meeting some of your favorite content creators, but especially when you know, you’ve been through similar things and you have very similar points of view and it was just really nice to be able to meet Kenyan, Lucy, and Amanda, and talk with them. Um, if you don’t know what Wine & Crime is, I have totally got you covered because they sent me a handy dandy promo for you to take a quick listen to.

{PROMO} Hey, true crime fans. Have you listened to wine and crime yet? We’re a true crime comedy podcast, hosted by three childhood friends who chug wine, chat, true crime, and unleash our worst minnesotan accents. Each week us Gals, pick a true crime topic and pair it with a delicious wine before delving into the background in psychology behind the crime. Then we share and speculate wildly about a couple of bunkers cases related to the topic. Past episodes include necrophilia colts, crimes of passion, cruise ship, and disappearances. Exorcisms gone wrong. All of this over a bottle of wine or let’s be real. Three, listen, anywhere you get your podcasts. You can also follow us on facebook, twitter, and instagram at wineandcrimepod. And check out our website and blog at wineandcrimepodcast.com. {END PROMO}

They are amazing. It’s really cool to see, um, and to start to become a part of like kind of like a pod squad, podcast squads. Um, and it’s, it’s really nice to be able to have that comradery between content creators and talk about like tech things we hate and um, you know, things we like to do when we’re recording and all of that. Um, it’s just, it’s just really nice and I really enjoy the fact that, um, other podcasters are super supportive and all of that good stuff. And I’m wearing my fucking patriarchy sweatshirt right now, courtesy of Wine & Crime. And I’ve also noticed that, you know, they, they use very heavy Minnesota accents all the time to be silly and {in a heavy midwesten accent] I’ve noticed my Minnesota accent is getting really good. You guys. Okay. Hey, just ope. Just going to sneak past you here for some ranch. [end accent]

They’re hilarious. You definitely have to take a listen. And, not unlike here, they talk a lot about social justice stuff too and a lot about sexual assault and working to end the backlog and they just do some amazing work and they, they always seem to make things funny even if they’re not funny because it’s like you can tell too, like it’s not even because you think it’s funny is because you’re trying to find humor in it because otherwise you’re, you’re gonna cry. And, I feel like that’s something that a lot of us can definitely understand. I think there’s something with living with chronic pain, chronic illness, disability that like, that’s your normal mode of operation, especially during this administration. Um, and it’s just really cool. It’s really cool. Go check it out because it’s literally my favorite podcast. I drove four hours to like go see them and then spend the night in a fru fru hotel because it was across the street from the theater, like was amazing.

Um, and they’re almost better in person than they are at home. I say almost because I had to wear pants, don’t have to wear pants at home. That’s the only drawback. And I. Well, and I had to pay for my wine instead of drinking my, for some reason, ample supply that I have here at home, even though I hardly drink. So I will say that’s a, that’s a great thing about their podcast is that learning more about wines and different flavoring and, and just being more well versed in that world has led me combined with my finally having migraine management, um, has led me to be able to actually enjoy a wide number of wines and figure out some of the things I like and don’t like, was just really nice. It’s really nice. You guys go listen to them and support them. Plus I won’t, I won’t say who, if you, if you listen to from the beginning you’ll hear about it, but one of them has type one diabetes and one of them has a glass eye, like they are very much.

chronically cool, chronically ill, chronically paying, I don’t know. Anyway, so that’s, that’s my big fun thing once I got to go spend time with them and it was amazing. Um, and I would do it again tomorrow if I could. Other things – coming up on the 10th. I am doing a workshop at Tool Shed Toys in Milwaukee about the intersections of chronic pain, consensual pain and sexuality. So that’ll be fun. Tool Shed Toys is the first education-based sex shop I ever went to. Actually Chronic Sex started very specifically because of Lucky, the head educator at Tool Shed Toys. I think I’ve told this story before, but she came in and did a, a session on sex and arthritis at an Arthritis Introspective conference that was in Milwaukee in 2015. I’m over Memorial Day weekend and I was very excited to go.

You know, I’ve talked before about the fact that I kind of have always done sex positive things. And I think I was lucky enough, even though my sex education still wasn’t enough to live in a fairly liberal state when I was growing up to the point where I have had, I think a little bit better sex education background than a lot of people get, um, and you know, sitting in that session and there are people in their sixties and people just 18 who are asking some very, very basic sex ed questions that I didn’t realize people didn’t know the answers to – especially when we’re talking about illness stuff and it was just completely eye opening. And you know, a couple months later the chat started and the website started, the podcast started and then I started getting to be able to do presentations, places.

So come check that out. I’ll put a link in the show notes in case you’re Milwaukee living or Milwaukee adjacent and want to come. I have some, some dates further down the line that I’ll get up as well when we get closer. I will say my next big thing is in June on the 17th in Montreal and there’s an organization that’s having a one day sex and disability summit and I’ll be doing the same presentation there which I’m really, really excited about – especially because like it happened over facebook messenger. Someone messaged me and they’re like, hey, I really wanted to go to that thing tonight but, like, would you come to Montreal and do it? And I was like, oh, okay! And the hubs finally got his passport so we’ll be driving up and taking in some sights and stuff on the way there.

And back, so really excited, we haven’t been to Canada together because he went in the days before you needed to have the passport. So I’m, I’m excited. It’ll be really fun, especially because there’s a Canadian baseball hall of fame. Um, and he’s big into baseball. I’m pretty big into baseball too, like our wedding was baseball themes. So I think that would be real fun to stop there and taken some of the sites that I’ve been able to see on my own, um, but, but get to share those with him too. So today, since it is arthritis awareness month, I wanted to share some things about arthritis and hopefully correct some misconceptions people may have. Um, and uh, talk about medications and medication side effects that are potentials when it comes to sexuality that I think we don’t talk about enough obviously. And, uh, yeah, I think that’s going to be an outline of the show today.

So, arthritis when, when I say the word arthritis, and more specifically when I say I have arthritis, people look at me like ‘the fuck?’ because I’m not 87 years old. People do not understand that osteoporosis and osteoarthritis are only two of over 120 conditions that sit under the arthritis umbrella. Really, the conditions under the arthritis umbrella are just those that have arthritis as a symptom or a potential symptom. So, Crohn’s disease can be labeled a type of arthritis because it’s not just limited to your gut, like your Crohn’s disease can, you know, ellicit joint swelling and a lot of the same symptoms as different types of arthritis can. To that point, arthritis is most of the time actually immune system based versus wear and tear or injury based. I think that’s something that people think of a lot with like osteoarthritis and osteoporosis, that you might have a pitcher who has a pitcher shoulder because they have thrown so hard for so many years that their shoulder’s just fucked.

And that’s definitely a type of arthritis, but it’s not the same as old person arthritis is not the same as the types of arthritis that actually can kill people. That’s right. Arthritis can kill people. A lot, like I said, of the arthritis types, our immune system based, so they’re either autoimmune or auto inflammatory and the difference between that is simply where the, um, and I say this with love, not with anger or to stay in, but where the oopsie or defect in the coding is. So with autoimmune conditions, the idea is that you are more prone to them and it takes maybe something specific to trigger them so you may have an underlying, uh, like propensity to develop rheumatoid arthritis that is always there because maybe it ran in your family and it just takes, you know, having a flu that lasts a little too long or getting Strep on top of having the flu or something where it just triggers your immune system in the right way, which we don’t know what the right way is yet, by the way.

to actually cause an onset of your condition. Now that could be a, this is the leading theory, by the way, that could be an illness that could be due to a trauma, and that could even be due to hormonal changes with pregnancy. There are a lot of women and other uterus-owners who have developed RA or other arthritis conditions after pregnancy or even who have had really like a mild symptoms of the conditions, but then with pregnancy, the changes that happen, uh, like kick up everything and in a very bad way. So maybe somebody who was able to get along without necessarily using some of the medications that are out there have to use them.

Uh, another really good example of that too, while not entirely arthritis specific, fibromyalgia’s considered like a comorbidity. So it’s very common for people to get fibromyalgia or have fibromyalgia once they have a type of arthritis. It’s very common in a lot of autoimmune or auto inflammatory conditions, but having arthritis is a pretty good predictor and fibromyalgia can be set off by trauma. That’s been proven in studies and there was a study in 2009 (I think?) that actually looked at Holocaust victims, people who had lived through the Holocaust and then their peers who had not gone through it. And just looking at them, I think it was like people who had been through the call, I had a 12 percent, like they were 12 percent more likely to have fibromyalgia than those who had not been through it. But there’s even anecdotal evidence with that too.

Lots of people who had been in car accidents and then their fibro developed like Morgan Freeman and he has really bad fibro and one of his arms specifically that is because of a car accident that he was in. I don’t remember how long ago, but it was I think like 2009, 2010 ish. And people were really concerned that he might die and that kind of stuff. Um, but you know, he lived obviously, and because of that he has fibro in one of his arms and he’s actually been very vocal about the fact that he uses marijuana to help control a lot of the symptoms, which we’ll get into that. But it’s, it’s a very common thing because it actually can help a lot more than other medications that are out there. Especially for fibro because a lot of the medications that are out there for fibro actually are meant to help with other things and just might help with fibro.

For some people it’s very hit or miss. And you know, this month is also fibromyalgia awareness month. So Hey, let’s talk about them both! So arthritis in the United States is actually the leading cause of disability in adults. So if we go really conservative with how we’re estimating, about 54 million adults have doctor diagnosed arthritis, so that doesn’t count, you know, that people that are 87 have osteoarthritis or osteoporosis and know they have it and haven’t necessarily taken steps to like get a diagnosis. It also doesn’t count the almost 300,000 children and even babies that have arthritis or another rheumatic condition. So ‘rheumatic condition’ is probably the, the more linguistically precise way to say and arthritic condition because, again, it, it kind of removes some of the conditions like maybe Crohn’s disease that can cause arthritis but aren’t necessarily like main forms of arthritis. It all is up to interpretation a lot of this stuff. Um, which is, it’s funny, it’s funny, there’s a lot of different conversations around which things should be arthritis, which things shouldn’t be arthritis and it changes depending on where you’re looking.

So, osteoarthritis affects 31 million Americans and if we fast forward to 2040, there is an expectation, according to the Arthritis Foundation, that more than 78 million people will have been diagnosed with arthritis. A lot of immune system based arthritis tends to show up in women more than men, whether that’s actually true or it shows like, and I’m really sorry for the gendered language by the way, or whether it’s just like, I don’t know how many of you are married or have a partner who is a dude, but like it’s pulling teeth to try to get my husband to go to the doctor when he needs to. And so I also wonder how much of it is like dudes wanting to like fit into that ideal quote unquote, you know, vision of masculinity. They’re not sick. They can work through it. Just rub some dirt in it, like, you know, so I, I wonder if that’s actually a legitimate thing or if it’s just skewed by, you know, who has more access to the physicians, who feels like they can go to a physician, like those kinds of things. For rheumatoid arthritis, specifically women, I think it’s like two to one that women develop versus men.

There’s a lot of different comorbidities we’ve already talked about. Um, fibromyalgia, but heart disease, diabetes, and I really hate that they have this on here as like, oh, a condition, but obesity too are all kinds of comorbidities for arthritis, common with arthritis. Joint symptoms include swelling, pain, stiffness, and decreased range of motion. These symptoms may come and go for some conditions like mine, systemic, juvenile auto. Nope. Shit, my brain, sorry. Systemic juvenile idiopathic arthritis or still’s disease. Um, there’s, there’s kind of almost two onsets. You get the systemic onset that includes fevers, a salmon pink, kind of effervescent rash that usually comes out more at night. And then I, it the fever part, there’s something else too. I’m forgetting it, but um, it’s, you, you get this kind of systemic onset and you get the joint onset but they may not be at the same time. So that can be a very large barrier to people being diagnosed correctly, especially children. Because you know, if a kid has a fever for like a week, maybe they’re just sick,

like maybe they just have a cold or something else and then their joints hurt, like maybe they fell playing like it’s really difficult to get a proper diagnosis for kids accurately and quickly. There’s a lot of different things that can happen with arthritis.

You know, you can have permanent joint damage and changes and I hate the word deformities, but deformities for a lot of people with rheumatoid arthritis, for example. That can mean your fingers kind of do this – I think it’s called swanning where they turn, whether that’s like, if you, if you hold the top of like your middle finger and like just twist a little bit. Like some of my fingers are like that. My index fingers specifically are like the top knuckle is turned slightly in a different direction than the middle knuckle. And for some people that’s incredibly advanced, especially people who were around before biologics where some of their fingers may be, you know, permanently bent and twisted in a way that makes it very difficult for them to use, which is not easy. And it’s very scary. I think too, when people are newly diagnosed because they go on and Google, like rheumatoid arthritis and then you get all these pictures of people who were around before, some of the newer medications and who, you know, maybe on the newer medications now, but that doesn’t do anything to reverse the joint damage that happened before.

So it can be really scary to like Google it. Some of those things very like go to the arthritis foundation or go to like another reputable site first and then move forward with googling. I Dunno. When I started being more active and learning about my condition is when I started writing and it’s – I started writing because of the fact that I wanted my husband who was very newly my boyfriend at the time to understand some of the things that are going on with me health wise and I didn’t know, I didn’t have the emotional intelligence to sit down and have a conversation of like, “so hey, if I have a fever, and like I pass out, maybe take me to the hospital.?” Like I didn’t the emotional intelligence to have some of those difficult conversations and it was just easier for me to write it.

It’s always been easier for me to express myself in writing versus verbally, uh, because I, I think a lot of that has to do with growing up abused. I get very intimidated in person easily and can, you know, shut down or have flashbacks and things and, or just get really anxious. And then I just don’t say what I want to say. So for me, writing is a lot easier because it gives me time to think, gives me places to pull information from and link to and honestly like this podcast is actually helped me form a better way of speaking and doing presentations in public has helped me a lot. But like it’s still really difficult for me to feel like I’m expressing myself correctly when I’m speaking with someone versus writing.

So I talked about that there were inflammatory types of arthritis like RA, like Lupus. There’s also infectious type of arthritis. So like things like Salmonella or other food poisoning can actually trigger some arthritis symptoms. The same thing with some sexually transmitted infections like gonorrhea or chlamydia. For other people, there’s reactionary arthritis. So if you had an infection in your knee and then they went and, you know, try to work on the knee a little bit, like in surgery to scrape out some of the infection or whatever, you may have reactionary arthritis. One of my friends from college actually a couple of years ago have messaged me like, “oh, hey, I just was learning about arthritis. And like in this class, they were talking like I thought they were just going to talk about like reactionary arthritis like my dad just had. But then they talked about yours too and I was like, whoa.”

It’s always fun to get those kinds of notes. There’s also like metabolic arthritis, so that’s like gout. Your body is not metabolizing your uric acid enough. So then gout happens. There’s a lot of different kinds, but it’s a lot of it honestly is autoimmune or auto inflammatory based. Which did I go over the difference between those two? I did not. So autoimmune – I talked about that – there can be something that triggers that and you might have, you may have more propensity to develop it anyway. That’s in your acquired immune system – so your immune system that grows with you and learns with you. There’s your innate immune system, the one that you’re born with. It mostly formed that, you know, carries immunity from your parents. Like some of those kinds of things. And auto inflammatory types of conditions – there’s actually, they think that it’s a genetic issue within like the DNA that makes up your innate immune system.

So that’s kind of the difference is autoimmune. You have to think about it as in a common speak is your immune system and auto inflammatory is like your innate immune system. Like if we think about lizard brain being like your instincts, like this is the lizard brain of your immune system. Now I’m just thinking of Jurassic Park things because I’m an adult. So yeah, types of arthritis can include ankylosing spondylitis, which Dan Reynolds, the lead singer of imagine dragons has. It can include Becets disease, which Hurt Blogger Britt Johnson has. It can include chronic fatigue syndrome, complex regional pain syndrome, Ehlers Danlos, which it’s actually the awareness month for that as well. Um, juvenile Scleroderma or even adult Scleroderma, Kawasaki disease, Palindromic Rheumatism, patellofemoral pain syndrome – which that I have too. And it’s like your knees, the tendons and muscles around your knee cap and your knees aren’t strong enough and aren’t equally strong.

So your, um, your actual knee cap can like slide and not be in the spot it’s supposed to be in. And it hurts. So that’s what that is. Psoriatic arthritis, Raynaud’s phenomenon. Sjogren’s disease, tendinitis and Vasculitis are actually both under that umbrella as well. There’s a ton of different conditions that fall under that. So, there’s a lot of different medications since there’s a lot of different conditions. There are things like analgesics, so those help to relieve pain. Some of them are topical, so there might be a cream that you get that you can use or something like biofreeze. Those kinds of things are topical analgesics over the counter medications that are NSAIDs or nonsteroidal anti inflammatory drugs like aspirin or naproxin/aleve. Like, like those are things that are also analgesics and their steroids. So corticosteroids or glucosteroids are the ones that you take for this, these kinds of conditions.

Prednisone is not my favorite thing in the entire world. Um, it’s very helpful. I just don’t like the side effects of light gaining a shit ton of weight and never being able to lose it. There’s also, when we get down to treating the actual disease course itself and not just treating the pain, um, we’ve also got D-M-A-R-D-s, DMARDs or disease modifying antirheumatic drugs. And then there’s also biologics. So let’s talk a little bit about, um, NSAIDs first because they’re one of the most basic kind of medications for a lot of kids, by the way, who has juvenile arthritis? They will try in kind of like heavy doses NSAIDs first to see if that will relieve your pain and for some kids that can actually help stop their juvenile arthritis. That is not me. That is not a lot of other people, but, but it has happened.

It does happen. That’s part of why they do that first. Um, but it’s not, it’s not great. I’m just going to say it’s not great. So some of the benefits of NSAIDs are that they relieve pain. They can reduce fever as well, fight inflammation, and protect your heart. The problem is that it can also increase your risk for heart attack and stroke. Surprise! Some people have really bad allergic reactions to some NSAIDs – Tylenol for instance. I don’t think a lot of people see it as a true NSAID because it acts a little differently. I actually react very negatively to that – basically anything with the PKU warning on it. So phenylketonuria or you know, that says it contains Phenylalaline or splenda or nutrasweet or any of those kind of fake sugars. I have a terrible reaction to ’em and it’s because of the same component that’s in tylenol that I have a bad reaction to.

It can cause a migraine. It can make me like vomit, like it’s not great. So if you’ve ever had reactions to tylenol, you’re not alone. Um, mine’s actually so bad that when we look at all those things that are diet or that contain those things, like there’s only like three types of gum I can have in like two of them are the fru fru stores and one of them’s bubblicious. I can’t drink diet sodas at all because of those fake sugars. Even the ones that Stevia – I have a ragweed allergy. And Stevia is in the same family, so I can’t have those like that’s unrelated but still annoying because I’d like to, like, not rely on caffeine so much, but I do rely on caffeine a lot. It helps with my pain control, so I have to have it, it just screws me. There’s also like you can have kidney issues, fluid retention, bruising, stomach issues, and of course, NSAIDs like any other medication, vitamin supplement, etc., can interact with other medications that you have. So it’s always important to check your ingredients when we look to the medical side effects of some of these things.

Some of the stuff isn’t talked about with patients when they’re like, “oh yeah, just take 800 milligrams of ibuprofen twice a day” unfortunately. NSAIDs can cause some not great reactions in the sexual realm as well? And not, all of these are not necessarily sexual, but they’re things that I consider that could impact your sex life. So they may increase UTIs. It may be difficult getting aroused or maintaining erections. You may have urinary incontinence or vaginitis which is like swelling in your vagina. And then there’s also fertility issues, which is something that nobody talks about and it’s a little fucking alarming. Yeah, I was absolutely floored when I learned that and nobody talks about it. I’ve been taking an NSAID daily since I was six, so it was just like the fuck umm and I like to know that. But I mean like, it doesn’t personally matter for me, but having that knowledge is important.

Let’s talk about dmards. So, um, there are a lot of different dmards out there and they include things like methotrexate. Um, shoot, sorry, I hit the run button. Plaquinel or hydroxychloroquine, Arava or lefluonomide, sulfasalazine, cyclophosphamide Xeljanz, Otezla, like, like these are all in the dmards category. So some of these things are like medications that really aren’t used that much anymore or are kind of last resort medications and things like cyclosporin that are also used for like, um, what’s the word? Shit, I’ve hit brain fog o’clock, but that are used for transplants. Organ transplants. There we go.

Those are things that are often down the line when they can’t, if and when they can’t get someone’s arthritis under control, they’ll, they’ll hit that. Um, so that’s not necessarily a first line of defense type thing. Usually the first thing that people get put on is methotrexate, which could also be Rheumatrex, Trexall, or Ortrexup, and that’s taken once a week. You can do it as a tablet or an injection. Most people handle the injection better. I’ve been on both and the injection was much easier for me because I got a lot of, um, like GI reactions from the methotrexate when I take it as a tablet form. I haven’t been on it in years because for me, the side effects vastly outweighed any benefit I was getting from it. I kept picking up everybody’s tiny little bug and instead of it being two days of the sniffles, I had bronchitis.

And things like that. So it’s not, it’s not great for me. For some people it works really well. And there’s Dr. Alexi Grom, who is a pediatric rheumatologist at Cincinnati Children’s. He doesn’t use methotrexate on his systemic kids because it doesn’t work the same way it works for other kids. So if you have another type of juvenile arthritis and may work really well or another type of general like adult arthritis and may work really well, but um, versus systemic or stills disease, it just doesn’t, it just doesn’t work the same way. I was really grateful to hear that because I’d been on it twice and failed it, at that point that I had had this conversation with him and it was really affirming and validating to know that I didn’t fuck it up. And that’s something that bothers me so much. We talk about that. This patient failed this medication. like, no, I didn’t fail. Methotrexate. Methotrexate failed me twice. It failed me twice. so let’s be honest with that. If the medication doesn’t work for me, it fails me. It’s not me failing the medication.

I’m going to step off that soap box before I get crazy like super into it. But like leflunomide or Arava is a very common second step for people who can’t handle methotrexate. I was on that same time I was on Enbrel and oh man, that was the lowest my sed rate was until I started my kineret. That combo was amazing for me. I had a couple of days where I really didn’t have pain. It was fantastic. The problem is that one of the Arava side effects is that it can fuck up your kidney functions and it was starting to do that. So I had to go off of it even though it was probably the best medication that I have been on. I’ve only been on a couple of the dmards, so methotrexate and Arava I’ve already talked about.

The first one that I was on was plaquinel or hydroxychloroquine. It helps a lot in lupus and it can be really helpful for people who have other systemic symptoms. But for SJIA or still’s disease specifically, it doesn’t tend to work very well. And that, that’s, that’s an anecdotal thing, like it’s not just based on my experience is based on a lot of other people that I’ve seen be on it and be like, “this doesn’t fucking do anything.” It did help a little bit for me, but I think one of the tricks with that one too, so you have to be eating enough. And I had just graduated college and was in grad school and working two to three jobs. So I was not eating enough. Let’s be honest – I still don’t eat enough, but my body also just doesn’t work on this shit enough.

So, so that’s kind of the dmard route. And that tends to be where people hit first when two to three of those medications have kind of failed the patient, they’ll move on usually to biologics. So biologics are things like Enbrel, Simponi, Humira. They can be either injections, whether that’s a self injection, like a self-guided injection, like you draw it up into a syringe or it’s already in a syringe or there’s auto injection where you push a button and then it stabs you in the gut or leg. Humira and Enbrel and Cinmia I believe all three have auto injections. I was on the enbrel and the humira ones for the auto inject and I like to have control of, of my syringe. I like to be able to see the medication going in. I also like to be able to not be stabbed, uh, and, and not have button malfunctions.

I had a lot of issues when I was on Enbrel where I had several batches where you push the button and it doesn’t actually load until you push. Adjust. Right. I’m sorry. I have like, I’m having like fucked up dinosaur claw hands right now and like I have to sit here and like keep trying to push this button while I hold like a chunk of my stomach fat. Like, that just doesn’t. It’s not great y’all. It’s not great. So these can be broken down into a couple of different categories. There’s tumor necrosis factor inhibitors or tnf inhibitors and these work by blocking the tumor necrosis factor. It’s one of the chemical messengers around inflammation. It’s one of those things that work well for a lot of different inflammatory based diseases. So whether that’s RA, whether that’s lupus, or like especially for Crohn’s and Ulcerative Colitis, there’s a lot of those things and a lot of these actually overlap. Humira works really great for inflammatory bowel diseases like Crohn’s and UC and also pretty good for RA. So since that, since it attacks one of those main like transportation systems for inflammation, it does a really good job of helping out a couple of different conditions. So I already mentioned a couple. Um, there’s Cimzia, Enbrel, Simponi, Humira, and Remicade. Remicade is, I believe, the only one of those that’s actually given through an IV. You have to go and sit in an infusion center for a couple hours to get that one done.

There is, I mean there’s benefits and risks to all of these and it definitely, if you are on these learn them. It gets scary to read that pamphlet, but I am a big fan of drugs.com because if you go to the side effects and contraindications section towards the top, they have all the stuff for the patients, but then towards the bottom they have all this stuff for the doctors and a lot of the stuff in the doctor section is not in the patient section. So like when I wrote my post about medication side effects that can fuck up your sex life. I was reading the doctor section because a lot of these things are mentioned in the patient’s action. It’s really interesting. But let’s move on. There’s also two medications that are interleukin six. They work on interleukin six that helps block it – these medications are actually antibodies that help block the area that interleukin six attaches to cells. And interleukin six is a protein that helps increase your inflammation levels. So it’s a great thing to not deal with. The first one is sarilumab or Kevsara, and then there’s also tocilizumab or Actemra. Actemra I’m pretty familiar with because it’s used a lot in systemic jia or still’s disease at that one is given, um, either through an iv or I believe they did just release a auto inject at home. Kevzara is given through injection,

Rituxin treats non hodgkin’s lymphoma and other cancers, but would attacks our b lymphocytes. So lymphocytes are a type of white blood cell and they’re involved in inflammation. So it can help a lot with, you know, rheumatic conditions, rheumatic conditions as well that, um, you have to get like a loading dose of infusions. Um, so it’s like you get your first dose, two weeks later, you get your second dose, and then every six to 12 months to get another dose in it, there’s a lot more likelihood that you’ll have a negative reaction to that one. Um, I know people who’ve been on it and do pretty okay with it, but just as a heads up, it’s not necessarily the most fun. Not that all of these are fun or any of these are fun, but there’s also abatacept which is Orencia (I believe) and that targets your T cells. It attaches to the surface of the T cell and it blocks communication between them, and that one is an infusion.

Again, you have to do a loading dose, so it’s one and then two weeks later you had another one and then two weeks later you get another one and then you can move to every four weeks. They also released a couple of years ago an injection form, too. And then last but not least, there is my favorite biologic Kineret or Anakinra, and that one interrupts communication for interleukin one or IL1. You know, it just helps stop the buildup of that. It’s a once a day injection. It has to be refrigerated. So that gets interesting traveling. Most of these have to be refrigerated if you have them in order to keep the cells within the medication alive. But, um, I never thought I would be chill with like doing an injection every day. When I, when I started seeing my new rheumatologist because I went to my old rheumatologist and I was like, “dude, you guys know I have systemic, can we just do Actemra or Kineret please?

LIke these are the two that are going to help me – two of the three that are fda approved to actually like do shit” and you know, they’re like, “oh no, we just have too many reactions with those.” So I switched rheumatologists and my new rheumatologist is amazing and I came to her and I was like, look this cimzea hasn’t caught on more. I honestly just tried it because they’re like, “it’s going to be similar side effects is what you have now.” And it was like right before my wedding and I was like, I don’t want to deal with other side effects so I’ll do this if it will buy me a couple months and kind of did. But you know, it just wasn’t doing what it needed to do anymore. And within being on Kineret for a month, my sed rate dropped from 40 down to six.

which is like the lowest it’s ever been, still tends to be higher now. It’s usually like eight, 11, 14, but 20 is the normal. So I’m still well within normal ranges and you know, I haven’t with the exception of when I’ve had like bronchitis or something like I, I haven’t had to really stop the medication at a couple weeks of injection reactions, which is common when you start out this medication. Like, it got to the point where I had to like have the hubs give me an injection in the back of the arm, which is the only time I’ve asked him to do an injection because I don’t want him to feel like he has to be involved in the medical stuff. I don’t, I don’t want to put that kind of pressure on him. And I also am a control freak when it comes to that stuff too.

Like I want to do it. Um, and it, it sucked because then I had an injection site reaction on the back of my arm and it itched like a bitch. But it was good. It was a good experience and you know, I’ve been on this medication for two and a half years, whereas a lot of the other ones it was like, ah, six months, this isn’t working/a year, this stopped working and it’s really nice to not have had to change that in the last two and a half. Oh my god. Almost three years. It’s just absolutely amazing. I’m so happy about it. Yu know, all of those medications, whether it’s the dmards or the biologics or even steroids and NSAIDs can actually all increase your risk for catching stuff. Other people have a, they all suppress your immune system to different levels of nonsteroidals like NSAIDs.

It’s very, very rare though that actually causes problems for people and even steroids. That’s, it’s pretty negligible for some people. But, um, the other like the other medicatIons can like increase your ability to catch infections from somebody having sneezed in the room 20 hours before you got there. Like, it’s amazing how that happens. Like absolutely amazing. So some of the other sexual side effects with these things. Um, methotrexate can cause vaginal dryness, decreased libido and fertility issues. Prednisone could cause decreased libido – for some people it causes increased libido. The steroids are interesting – like for most people, they gain weight, some people lose weight rapidly. So like for most people I think their libido pops up. For some people it pops down, it just kind of depends on your normal reactions to steroids, I guess. I don’t know, for plaquinel or hydroxychloroquine it’s getting, having difficulty getting aroused or keeping and maintaining erections for sulfasalazine.

And that also brings reversible fertility issues. Cytoxin, which is one of the ones that is used in organ transplants, can cause fertility issues. And then for biologics or biosimilars, which are like the, the easiest way to explain it in lay person terms is it’s almost like a generic biologic, although that’s not 100 percent accurate. It’s simply that like if Pfizer created Enbrel and now Teva has decided to create like this, this is a hypothetical – Pfizer created Enbrel but like, like the rest of this is hypothetical. And then Teva decided they’re going to create an Enbrel biosimilar. It’s not a generic. All it is, is it follows the same chemical composition is enbrel, but they can’t call it Enbrel because it’s not manufactured in exactly the same conditions and it’s manufactured by a different company. So that’s basically the biggest difference.

Anyway, those things haven’t been researched enough to say what any longterm side effects are, especially within sexuality, which sucks., I don’t know about you all, but I like to know when my sex life’s been fucked up. I mean, it’s not bad to have that information. Yeah, fine. Um, so that’s kind of like, like a really big overview of arthritis. If arthritis isn’t treated, it can cause a lot of problems from joint damage and deformity up to and including death. There are people who have passed away because arthritis fucks up their neck enough that like things start to not work or the most common thing is that someone passes away due to a complication with medication they’re on from it. So sad story time [TW for death here} In December of 2012, I actually lost the first patient that I had met online who had still’s disease or sjia too. She passed away as a result of um She’d been on a whole bunch of these medications. Some of them are new enough that she hadn’t, but her immune system was basically shot. She had almost none. Um, and between that and the medication she was on currently and it was just really easy for her to catch an infection that, you know, she was in the hospital, she had organ failure and then the next day they thought they had stabilized her and decided to send her home.

WHY would you that when someone’s organs were failing the day before?! Within 24 hours she was back in the hospital and quickly passed away. So essentially it was an infection that like went out of control because some doctors fucked up their shit.

And that like… real talk time. That was an extremely hard thing for me to work through. Um, you know, I’m still close with her mother in law to be, um, she had gotten engaged a couple of weeks before I had and so we were looking forward to planning our weddings together and like we were even going to try to figure out like should, should T and I just elope and go to England and, like, should we have a double wedding? Like I mean really silly stuff that maybe wasn’t based in reality but like excited silly stuff and stuff that we were happy to share with each other. Um, and we were, we were gonna work on this site called A Very Spoonie Wedding and talk about like planning your wedding when you’re sick and it just… losing her was really hard. I had lost the one person who had been through not only the sjia stuff but having a shitty family and knowing, you know, knowing like from a soul level what someone else has gone through in a way that people don’t like, we just don’t have those conversations or we don’t connect on that level. And it was really hard. Um, right before she passed away I had had c diff and gotten really sick and like she was like, “hey, please don’t die.” And I was like, “no, I won’t, but you can’t die either.”

We kinda joked about it and then like a couple months later I had my fibro really kicked up terribly and finally got a diagnosis. But like, it, she really had to do a lot of emotional handholding for me and emotional support because I was just wrecked and it didn’t ever matter what was going on with her,

what’s going on with you and then like you talk about it and then she’d be like, “oh, I’m so sorry I have to go. Somebody in the hospital just brought my food.” And you’re like, wait, you’re in the hospital. What did I miss?

When she was in the hospital with organ failure, my back spasms are getting bad and she was selfless –

“Please go lay down and get some sleep and I love you and it’ll be okay.”

And she’s dying and she’s telling me to take care of myself. There are not many people in this world at all the have that kind of empathy and compassion for another person. And um, it was really hard. Sorry to make this episode a downer, cheeses.

Um, I was already struggling with my depression because of my fibro and to lose my best friend was already hard, but then to also be like slapped in the face with a reminder of my own mortality because of my health was like, whoa, really hard.

Um, especially after having just gone through like c diff and some major things like I was so scared and honestly, like every time I’ve had to switch biologics since then I get so scared because I’m like great. Like, is this going to be the one that like makes it so I catch that infection and I die? Just, I don’t, I don’t even have words right now to, to even talk about it. Um, I, I know that she wouldn’t want me to be afraid and I try not to get woo woo, but I am somebody that believes in some sort of afterlife because they’ve had enough experiences. Um, and, and so I know they’re there or something.

Um, and on my wedding day, her mother in law to be sent me some earrings that she thought would go perfect with my dress and you know, well wishes for the wedding and um, so, you know, I’m getting ready when I’m putting stuff on and putting my earrings and I had to like step back and take a minute and it wasn’t because I was emotional about getting married or scared or any of that, like I miss my friend and I wanna share that day with her so badly and then all of a sudden this wave of calm hit me and, and was just very obvious that she wasn’t  not there. This is just one of those things that we don’t want to talk about. Right. So I am not going to get down on myself for crying like I normally would, but it’s really hard. You make friends and you try to celebrate each other and then stuff happens because then you’re like, well, I don’t want to get close to anyone else. I don’t want to go through that again. Like, that’s not the real world, you can’t not get close to people. And you know, I have some friends right now. They’ve been in the hospital several times the last couple months even like in a coma and was just really scary. All always takes me back to my friend Kenzie who lives in Minneapolis, like she was in a coma in January for like a week,

um, [inaudible] she wound up with pneumonia and just shit went bad. And then she was in the hospital again a couple of weeks ago and T and I didn’t have any plans for the weekend and I was like, we have to go, we have to go. I don’t care that it’s four hours we have to go.

And I just knew, I felt that if somehow we didn’t go, like somehow something was going to happen to her and it, I would have not utilized my last chance to see her and when Laura was so sick and dying, all I wanted was the ability to like, hop the pond and go to see her and hold her hand. Yeah. I’d like to be in a position where I can do that really hard, been like, as of December, it’ll be six years, like been a long time and there are days where I don’t think about her at all now. Not a lot. Like,

oh, I miss her. I miss the naivity from 2012 of not knowing someone personally that had passed away because of their condition because now it happened. So often happens so often. it was emotionally taxing. Even if you didn’t know someone. Like in the systemic jia world, it happens a lot and I have a lot of friends who are parents to kIddos that have it and to watch them struggle with those feels and fear and living in a state without a fucking pediatric rheumatologist have to get air lifted to another spot. Like

it’s terrifying. And oh, emotionally, very taxing emotionally very taxing.

Um, because you just never know. Like tomorrow the day I’m gonna wake up and find out another one of my friends have died because.

Yeah. And, and the thing that bugs me the most about the Laura stuff is I, I read a book probably like nine months after she’d passed and the person in the book, it was like a autobiography type thing that talked about living with illness and stuff and I don’t even remember what it was, but the person in the book had essentially the same thing that was going on with laura and they were in the hospital for two weeks and even then they weren’t sure they should release her and laura was in the hospital for two days and then home for like maybe 12 hours. Then. Then back In the hospital died. Like this is very clearly one of those things where physicians fucked it up. Physicians fucked it up. And that’s scary too. I think a lot of people trust their physician so much that they’d follow them to the end of the world. And we don’t think about the fact that physicians are not all knowing, all seeing omniscient, bad ass beings. Like they’re human. They make mistakes. But unlike when you write something like when you choose a wrong word, like their mistakes kill people, um, and it’s terrifying. It’s absolutely terrifying. It’s one of those things that like really pushes you to advocate for better education for providers and better knowledge around rare diseases cause systemic jia or still’s disease, whether that’s juvenile or adult onset onset. Tt’s a rare disease. So, uh, the fact that doctors fucked some shit up,

you know

it’s a rare disease, but also you should know not to fuck that shit up. Um, it’s just hard, right? It’s just really hard. And to, to live with that unpredictability. Not only of your health, like am I going to be able to take the three bags of recycling down to the garbage today? Um, obvIously, I mean the recycling to the recycling bin not the garbage, but there are next to each other like, or like is today the day I like catch an infection and die. Like the unpredictability is so emotionally draining that frankly it’s no wonder we get fatigued. Like if you just look at the emotional components, lIke holy fucking shit. And then you add on the physical components of like, oh, well you can’t sleep more than four hours at a time and x and z and y, and there’s just a lot. And I’m sorry for crying, although I’m also not sorry for crying because I think it’s probably something a lot of people couldn’t really do. Um, I just really don’t like cry and I go to nervous laughing instead. So, um, welcome to the wonderful world of arthritis.

Uh, if you’re in the milwaukee area, come see me when I’m not crying. Uh, on the 10th at Tool Shed Toys. And stay tuned for more fun stuff in the next two weeks. Love you.

Sex is produced every two weeks by me. Music is from Paddington Bear because they’re awesome. You can find show notes and more over at chronicsex.org. If you’re enjoying listening to the show please subscribe. That way you won’t miss a single episode. It’d be really chill if you take a minute to rate the show too – not only does it give me great feedback, but it also helps the podcast get seen by people who may not know It exists, and that’s pretty cool. You can support us over at patreon.com/chronicsex. As always, you can find links to everything at chronicsex.org from social media accounts to resources, sex, toy reviews, and more. Until next time, please take care of yourself. remember that you are a freaking bad ass.