Episode 037: Ankylosing Spondylitis in Men and Women
Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. This is your host, Jayson Sacco and I hope everybody is having a fantastic day. You know, personally these last few weeks, I've been really dealing with some what seems like extra amount of fatigue. And I don't seem to be the only personal loan as I read through the Facebook forums, notice a lot of questions on fatigue and how do you handle it? What do you do and where's it coming from? It sucks and whatever else, you know, people are talking about.
So this week's Question of the Week is going to be what do I do about the fatigue? Well, we all know that with Ankylosing Spondylitis, we have increased inflammation, and that inflammation can lead to sometimes excessive fatigue depending on on the level of inflammation. So there's really a couple things we can look at now. In my case, I don't know if so much the fatigue is caused by inflammation or if I'm just not sleeping well enough at night, I think that's really my issue, not getting a quality enough sleep. When I do get some sleep, and I have a Cpap machine, and my mask just hasn't been sealing. My mask is old and I need to replace it. So I think that will fix some of the issues. But we all know that for a lot of us, the main culprit is inflammation and how does it dovetail in with creating the fatigue? Well, if you have inflamation issues, you know along your spine and your hips, wherever they can release a chemical that has a role in the fatigue that we deal with. So that's just one thing you want to think about is if you're feeling fatigued is the underlying symptom really inflammation that's just not being treated properly via medication. So we also know that with these we want to aim for sound sleep, which is me.
So this particular paper that I was reading, gave a few tips. Some of these are easier said than done. Go to bed at the same time every night, including weekends. Well, that's fairly easy to do since I don't have much of a social life. So going to bed at the same time is usually not that hard. Take breaks throughout the day instead of naps. Well, that's interesting because I tend to fall asleep in odd spot. So you know, I can just konk out in the middle anywhere. So it's not really an issue of taking a nap. It's just a maybe a power 10 minutes that I might be out. Another item is do relaxing pre bed activities, such as deep breathing exercises. Avoid sleeping in on the weekends, or vacation days. I don't generally do that. I'm pretty much up between six and seven every morning. Take a warm bath before bed. That's probably not what I'm going to try. But if it helps you, great. I'd love to have a hot tub. I think that'd be fantastic. And then regulate the temperature in your bedroom. Well, mine stays, you know chillier than the rest of the house. But that's just a function of the way that this particular place is built. So another thing you can do is check for anemia. I know I have anemia and I take 50,000 IUs of iron once a week. But if you're getting frequent headaches, dizziness, shortness of breath, or have some pale skin, that could be signs of anemia, and you want to talk to your doctor about that addressing that might help you sleep better. I think it's really a function of doing all of these but you know, address each one, one at a time. There are some dietary considerations. I know myself, my snoring, which is my sleep apnea is a function of the weight I've put on, I need to lose a fairly large amount of weight for me, and I think in doing that, I would have less sleep apnea and thereby less fatigue, and maybe less inflammation. Get some exercise. Again, easier said than done. But there's always something we can do. I try to do some exercise before I go to bed or while I'm watching TV. You have to figure out what fits best for you, your pain levels, your ability, what what you're capable of doing. So those are just a couple of really basic things to consider with the fatigue and really more designed around before you go to bed, the more we might be able to wear ourselves out before going to bed, the better we might sleep. So it's just something to consider and see if that doesn't help you out at all.
And now on to today's topic, and I came across this article and it is about a year and a half old. But I don't think that much has changed in relation to this topic. And that is, you know, Ankylosing Spondylitis in Men and Women. What are some of the differences? Now, we know Ankylosing Spondylitis is a form of arthritis and autoimmune disease. There is some question of whether maybe the classification might change but for right now, that's kind of where it sits an inflammatory disease. We know that it affects the spine. It can cause pain, can limit range of motion and it involves flares. You'll see many people talk about flares and I'm having a flare up that can cause you know, acute symptoms, and then maybe followed by a remission, but flares there is no timeframe, you know, it's going to last a week, it's going to last two days, it's going to last six months. You don't know it's a big unknown. So hopefully, if you get one, it's followed by a period of remission where it's not such a severe set of symptoms for you to deal with at that point.
Now, Ankylosing Spondylitis can vary a lot from person to person, symptoms can be severe, but as we know not everyone with AS develops spinal fusions or has serious complications. Some people might have a much more mild case where others might be much more severe. Mine developed very young, very hard hitting. So by the time I was 14, I was in extreme pain and that lasted for a good 15 or so years, and then, you know, it was brief bouts of remission in there. But by my mid 30s, it started changing a little bit. Come into my 40s I had more pain, second I had more hip replacements. And then now I've been on a good biologic that works for me for the last couple years and that's really made a huge difference. So anyway, symptoms can be severe, as I said, but not everyone with AS develops, you know, the spinal fusions are as the serious complications. What we do know is that neither age nor gender affects the severity of the disease. So that's kind of interesting, and that's good to know and what was once thought, you know, to be more prevalent in men, and there still is a few more men diagnosed versus women diagnosed. I think that number like I've said in other episodes is really going to come in parody as more and more women are properly diagnosed and are not left off on the sidelines with some different diagnosis just to, you know, get them into medication and move on, then this delayed diagnosis and women can then mean that they may have more of an advanced disease due to being you know, misdiagnosed for X number of years, however long it took them to get their diagnosis. There is some research that does suggest there are differences in the way men versus women get the disease, and function with the disease and the progression of the disease. But the findings have been kind of inconsistent. So, you know, there is nothing at this time that says you're going to see this in women and this in men, but they are trying to look to see which way each of the sexes is developing and advancing with AS, and then part of the problem is that research has focused heavily on men. But again, as with the items that starting to change, as more and more women are diagnosed or their misdiagnosis is corrected. So some recent studies have included more women, but there's not enough data yet to reach from conclusions about the differences and sexes with AS and well the exact cause of AS is not clear.
There is a pretty good idea that genetics play a role. One risk factor for as is having a family history of the disease. I find this interesting because in my family, well, we don't know that many generations back. I'm the only one with it. So I am the entire family history of Ankylosing Spondylitis for my family. But I know there's others, fathers, daughters, mothers, sons, you know that it's passed down from from generation to generation. We know that as Ankylosing Spondylitis progresses, you know, the pain becomes more debilitating and can cause a reduced range of motion. You might also experience pain in other areas of your body. You know, be your hips, neck, shoulders, feet, those are all susceptible and many more to damage from Ankylosing Spondylitis. As some people, you know, they're only going to have maybe some very intimate and back pain, very minimal back pain and discomfort, while others can be quite severe. Mine is quite severe where I've had already the fusing of the spine, and some fusing in my neck. So, you know, everybody's going to be different. I’ve met people that have had it for a number of years and have had very little in the way of fusing so it's great for them that that's the version of Ankylosing Spondylitis that they got. It can be debilitating as we know and then it can eventually lead to disability. Early symptoms, you know, fevers loss of appetite, fatigue, anemia, inflammation of the eyes, iritis and uveitis I've done episodes on all of these in a bit more detail that you can find in my past episodes.
Genetic predisposition. You know, many people with AS have a gene called HLA-b27. However, having this gene doesn't mean you'll develop Ankylosing Spondylitis and on the other side of that, not having this gene, you could still develop Ankylosing Spondylitis. So the link between HLA-b27 and Ankylosing Spondylitis, we do know varies by race and ethnicity. For example, among Caucasians, about 95% of those who have as test positive for the genes, about 80% of people from the Mediterranean countries do, well, only about half of African Americans with AS test positive for this gene. So again, these are all areas are looking into and it's really stuff that can change on a year by year basis as more and more research is done on Ankylosing Spondylitis with age, arthritis is also can sidered a disease that comes about as you're older, it's what the seniors will get, as I used to think when I was much younger. But Ankylosing Spondylitis commonly occurs in people between the ages of 17 and 45. Some younger, some older, some people are diagnosed as early as kids and that was me. Others I see are getting their diagnosis as in their 40s and 50s. But maybe have had problems since the 20s. The age of onset is about the same and men and women. It was previously thought that men with AS are more prone to pain in the spine and back than women. But there's been more research done. That indicates that back pain is the main symptom for both men and women seeking diagnosis. In addition, it's found that women have more neck hip and knee pain, while men generally might have more foot pain. Again, these are general items. You as a woman could have, you know a ton of problems in your feet and little in your hips, I am a man I had a ton of problems in my hips. So they're general. But again, everybody's gonna be different, you know, reproductive health concerns, as affects men and women during their peak reproductive years, but does not really appear to affect fertility. It can affect and you'll see this if you read through any that the Facebook forums is the function, the ability to be intimate the ability to create kids can be slowed down or minimized or even reduced, not because of inability to be, you know, create the children. But because of the pain associated with conceiving, caring and birthing the children, women with AS who are pregnant or trying to conceive, really want to talk with their doctors to find medications that can help them keep inflammation under control, and have even seen some women online comment that once they became pregnant, and got into the pregnancies that put them in a remission from Ankylosing Spondylitis. So obviously you can't spend the rest of your life pregnant. But that's been beneficial for some of those women over those nine month periods. Symptoms such as a stiff spine, back pain can continue throughout pregnancy, and NSAIDs, you know, non steroidal anti inflammatory drugs, like ibuprofen or Advil can help relieve some of that pain, but can cause harm to your unborn child. So, don't just take them because you used to take them. Anything you're putting into your body when you're pregnant, as you well know, can affect the baby. So make sure to talk with your doctor about what's appropriate for your pregnancy.
As a side note, really not dealing with pregnancy or fertility or anything like that. But I came across an article from a magazine. It was a study done back in 2015 was when it was published and it was called Sexual Dimorphism in the Th17 Signature of Ankylosing Spondylitis. I'm not going to go real deep into this because I butcher it with all my medical terminology pronunciations. But what I will say and I'm going to put a link to this in the show note is the conclusion was kind of interesting. The conclusion read the results of the study demonstrate distinct sexual dimorphism in the activation status of the immune system, in patients with AS, particularly in the Th17 access, this demorphism could underlie sex related differences in the clinical features of AS and could provide a rationale for sex specific treatment of AS. I found that really interesting, the whole study, as I read through it, and I hope you'll take the time to read it is, you know, five years ago, they were looking in many years past, but this study was looking at how might we treat men and women that get this disease? We already know that there could be some differences in the way the disease presents itself between men and women, we do know that those differences that the way the disease presents itself may result in women being taking a lot much longer time to be treated, which could then result in, as we said earlier, a much more severe case because of the delay in treatment. So I really think it's interesting that we have this disease here and it gives us all the some of the same characteristics, some of the same problems, but can present itself in so many different ways that they're even now looking at, is there a way to treat men versus women so that both sexes get the proper treatments? It's not who's gonna get the better treatment? Who gets it worse? It's how do we look at this disease? Or do we even look at this disease based on a men versus women's situation? And then how do we treat it from there? So I just I find that very, very interesting, and I think that is a very well needed and long overdue way to determine this disease and look further into it.
So finally, we know that if you have Ankylosing Spondylitis, whether you're a man or a woman get help, the sooner the better. I personally am a believer in biologics. I like them for myself. I thought they've done well. I know other people can have some quite adverse reactions to them. So talk to your doctors about what is the most appropriate way for you to treat your Ankylosing Spondylitis after diagnosis. You know, it's important to see your rheumatologist at least once a year. You're probably going to want to start off every six months but at least once a year, even if you feel that your symptoms are mild. And then lastly, we all know that there's no cure for ankylosing spondylitis, but it's the early detection that both men and women need and that can help to control how it disease progresses. By giving you the early treatment, so anyway, early treatment, early diagnosis can help alleviate pain and prevent the disease progression of both men and women. So, well, there are some interesting studies done to say, you know, how do we treat the different sexes Overall, we all tend to get the same symptoms, get treated, get documented, if it gets to a situation where you're looking to apply for disability, at least here in the States. I don't know how it works in other countries, but at least here in the States, that documentation is going to be critical. Did you get in there? Did you do everything the doctor said? Did you continue to show worsening symptoms to the point where the disability becomes needed. So you control that by making sure you stay in and visiting the doctor and making sure that you discuss with him or her how that disease is progressing in you. So, again, I can't thank you all. Enough for hanging out with me. It's great to have you guys here and interact with you online. And I look forward to many more episodes of talking with everybody. Take care and have a wonderful day.