The Ankylosing Spondylitis Podcast - jaysonsacco EPISODE 21
Episode 021: But Women Don't Get AS
00:00:00 00:16:04

Episode 021: But Women Don't Get AS

Hello, and welcome to The Ankylosing Spondylitis Podcast. Well, this is the month of November and I hope everybody's doing well.

First I want to take a minute to talk about the show itself. I cannot thank everybody enough for making October just an amazing month for the show. The download numbers were through the roof and the feedback I got on the episodes was fantastic. So I really appreciate that and we added in a number of new countries that have access to show

Let's get right into the show for the Question of the Week, I saw several people asking the same question online and it is can Ankylosing Spondylitis be inherited? Is it an inheritable disease you know, from one family member to the next generation to generation, in essence, it can run in families. In one of those markers, they used to look at it as the HLA- B27 gene. Now having this gene doesn't mean that you will get Ankylosing Spondylitis, but it is one of those markers that they look for. I found this kind of interesting in that research has shown that more than nine out of 10 people with AS carry the HLA-B27 gene, that's pretty amazing. It's almost 100% of everybody has it having this gene does not necessarily mean you'll develop as, as I said, it's estimated eight in every 100 people in the general population have the HLA-B27 gene, but most do not have AS so if you have it, you may end up getting AS but it doesn't mean you will. It also shows that's one of things you can look at it and family members and this particular person in the Question of the Week, they were wondering if they should have some family members tested for it because they and the other sibling had it. So I kind of replied back that it's not going to hurt anything. It never hurts to know if that gene is present because it could go along to explaining some future medical conditions if they run into AS it's also something to know that as we said as can run in families that gene can be inherited from familymembers to family member and if you have AS and test show you carry the HLA-B27 gene and their is a one in two chance that you could pass on the gene to any children you have is estimated that between five to 20% of children with this gene will then go out and develop AS that's still quite a wide variants of it. I have three kids they were all tested for the gene and if I remember right to came back with it, one didn't maybe all three had it. I don't remember exactly what it was, but they were tested and I believe my two older ones did have the gene one is showing some effects. I don't know if she'll come to grips with it. And hope you know, personally, I hope nothing ever develops of it. The other one is not nor is the youngest one.

With that said, let's move on to today's topic of discussion. The Question of the Week done, let's look at this week's topic. You know, when I was diagnosed with Ankylosing Spondylitis, I was told a couple of things. Now,granted, you know, this was 35 years ago, so a lots changed. But when I was diagnosed, I was told this is primarily a man's disease, you'll rarely if ever see it in women. And it's primarily disease people of Mediterranean descent.

What we found out is that is obviously not the case. So we know that today all these advances have been done in the research for Ankylosing Spondylitis that in fact, women get it probably just as much as men. I found this really cool article and it talked about different things dealing with a woman's diagnosis with Ankylosing Spondylitis. Again, as we've all heard, and been told women don't get it, but we know that that is incorrect. And I've had to do is look through the boards on Facebook, you'll see that there's just a ton of women dealing with this condition. So as we know, Ankylosing Spondylitis is an inflammatory form of arthritis that we get that starts in our SI joints or spine moves up the spine and then or can affect your ribs, your shoulders, your neck, move down affect your knees. It's going to take it all into play when it does this thing. So female patients are still underrepresented in clinical research This under recognition results in a delay a diagnosis which causes under diagnosis and a delay of optimal treatment strategies, which leads to increased disease burden and female patients with Ankylosing Spondylitis. So it's really something that needs to be looked at and addressed. And thankfully they are number one, as common women, according to the authors of a research review about as a women a bias that as affects men almost exclusively as existed even through the first half of the 20th century. Earlier estimates figured that the male to female ratio to be in the area of nine to one today data suggests that the ratio is much more even, some estimates say two to three to one.

So they're still showing a bias towards men having the disease but it's dramatically decreased. And I think you're going to find as they do more and more research on it that that drops from say, two to 3-2 to 1 down to maybe one two to one, it's going to be almost on par. One population study of Canadians and Ontario, which looked at the prevalence of AS between 1995 and 2010 found that although men had greater prevalence of AS throughout the study, the male female ratio decreased significantly over time from 1.7 and 1995 to 1.21 in 2010. That's pretty amazing.

In other words, as is more common in men than a women, but not nearly as much as previously thought, All we need now is to get that message out to doctors. The others go on to say, but both doctors and women living with as symptoms don't know about as or suspected as a cause of women's back pain. It can lead to significant delays and getting diagnosed getting on proper treatment and on the path to feeling better.

Number two, women take longer to be diagnosed with ankylosing spondylitis the pain and stiffness from AS can strike you know, not just in the lower back the pelvis or the hips, but we can get it and other joints as well. Anyone which is has connective tissue that link ligaments and tendons to bones. Basically, as you know, we can hurt all over it and it can lead to being a very debilitating condition. As we're well aware, older research found a staggering discrepancy in how long it took typically took women to get diagnosed with as compared to men. One study from the 70s found that for men, it was an average of three to four years. For women, the diagnosis delay was 10 years on average. So that really can play a huge part in the treatments that women need to get on to live a healthy and productive life with as more recent research from 2017 showed that 32% of women out of the study of 23,889 people showed the average delay in diagnosis for males was six and a half years compared to 8.8 years for women. So men's diagnosis has gone longer, while women's is shortened up a little bit, you know, and there's still some reasons for the under diagnosis. You know, could it still include the bias of as being only for men or differences in the disease? Depression and women that could be delayed or misdiagnosis according to this study. So again, a lot of information I'm going to have all of these links down in the show notes for you to go and do further research on your own.

Number three women may not have as much radiographic damage. Again, this is going to get kind of technical, and I apologize if I do it any Miss readings of anything, but there's radiographs or x rays. I the single most important imaging technique for the detection and diagnosis and follow up monitoring with patients as well. Doctors take into account a patient's history, physical exam and blood work. Well diagnosing Ankylosing Spondylitis seeing damage to the bones on x rays is what clinches the diagnosis. If they don't see that damage on your x rays. Or it's hard for them to see or it's limited and in visibility. They're going to start looking for what's Osteoarthritis it's this it's that it can make the diagnosis of women even that much more difficult when you have the symptoms of AS but no radio Graphic damage. You may have a condition called non radiographic axial spaniel arthritis, women may be more likely to be diagnosed with non radial axial spaniel arthritis than men. The challenge though, is that newer biologic medications used to treat some as patients are not yet FDA approved for people with non radiographic axial spinal arthritis. So that may change is the FD is considering new indications. So if women are more likely to have non radiographic than men, they may also may be limited to the disease treatments. This is really kind of a catch 22 for women as they try to function and get proper treatment for AS.

Number four, women may have different as symptoms which in parentheses, but this is debatable to symptoms as present differently in men than women. The answer depends on which studies you look at. Since results vary. Some research has found that women with AS tend to have more pain in their cervical spine and peripheral joints than men. However, other research is not for Differences between men and women in terms of which joints are affected by AS.

Number five women have more systematic symptoms when you look in addition to the lower back and joint pain that is associated with AS multiple studies have found that female AS patients experience more inflammatory bowel disease than male patients do. Research also shows higher prevalence of psoriasis and inflammation, you know, skin disease and women than men. You know, those are the things you have to be aware of, and that can affect your as diagnosis. So make sure that you're talking with your rheumatologist to cover all your bases.

Number six, women may have more misdiagnosis, I can understand the frustration I read on the forums of women that say I swear I know I have AS but I just keep getting told this and I don't think it's this but it's got to be that research shows that women who report having widespread pain are twice as likely to have a delayed as diagnosis. Those who don't The most common misdiagnosis fibromyalgia, which has some overlapping symptoms with as I see this on the forums all the time, I'm being told I have fibro and I don't think it is and so that I think that's a go to for many doctors when they don't see the damage that we talked about on the X rays. Previously, they jumped right to a fibro diagnosis because they may not want to consider a non radial axial spaniel arthritis diagnosis. So you have to be your own advocate, you have to be your best advocate, going forward with diagnosis and just go after the doctors and saying, here's what I need to know here's what's happening. And if that doctor doesn't agree doesn't seem to work with you go to another doctor. Keep going to rheumatologists and see what the different doctors say don't just settle with one doctor's opinion if if you think that that doctor is just not giving you the the time you need doesn't mean that their diagnosis is wrong. You have to wait for all the information there. ending to you but also keep pushing if you're not feeling better for any types of treatments that you're getting.

Number seven women may respond to as treatment differently. The two mainstays of drug treatment for AS are the non steroidal anti-inflammatory drugs the N Said's, which helped reduce inflammation and relieve pain and then biologics, which target specific parts of the immune system to reduce inflammation slow down or in some cases, maybe even stop disease progression. Research shows that anti TNF biologics you know medications like Humira and bro Sims and some others may not work as well and women as in men, you make sure that if one biologic doesn't work for you, you may have to keep trying don't let that be a downer for you don't let that turn you off the biologics. You know, if you don't succeed on one, keep going. I'm on my third and this is finally one that's working fantastic. So don't think that you have to stop at one or that anything. After one is just not going to work keep at it. Other research has found that there are certain predictors associated with a better treatment response. These include having the HLA-B27, genetic marker, a short disease duration and not having taken TNF biologics before.

Number eight women with as may have worse quality of life we know that's not really surprising that going longer without a proper diagnosis and treatment can impact the way women cope with as compared with men research from the Arthritis power research registry presented at the American College of Rheumatology in 2008 teens Annual Meeting found that there was considerable gender differences and how as affected the patient's quality of life. In nearly all cases, women reported that as took a greater toll on their relationships than men did. For example, well 45% of women said that as cause difficulty maintaining friendships, only 25% of men dead. In many cases, women reported that as affected their ability to function well work more than men 29% of women so That they were frequently late to work compared to 12% of men and 24% of women said that they had to switch their job as a result of as well. Only 15% of men said the same. Other research suggests that certain as side effects such as fatigue, night pain, sleep disturbance may affect women more than men and women who have AS and fibro and other co-occurring types of chronic pain may have different pain sensitivities, that affects how they handle the quality of life issues.

Those were eight items that I briefly went over to discuss about how as affects women and it's not just a man's disease anymore. It's never been a man's disease. It just meant there was a lot of women that were misdiagnosed or undiagnosed. So how can women advocate for better health? One of the best things women can do is to make themselves aware of symptoms of as, as well as the differences in mechanical verse, inflammatory back pain. Make sure to press the doctor to see if, as could be possible diagnosis for you or your family members. or friends, you have to find a doctor who cares about you. If you don't like the diagnosis and you seem to not be getting the results from this doctor, go find another one. You know don't let that one doctor if you are unsure be the final say and in what you're dealing with, you have to be your best advocate. You have to be the advocate for your as treatment men, women, whoever you've got to go to the doctor you've got to have a set plan of what you're looking to do what you're looking to get out of that appointment. And don't hesitate to write down questions write down how you've been feeling keep a journal of my hips hurt this day, my my back hurt this day. The pain scale on a scale of one to 10 would be this document everything out because the more you can document everything out before a diagnosis of as has given the better you can help the doctor lead to that diagnosis.

Again, I really thank everybody for listening. If you have any questions, don't hesitate to reach out To me, and I hope you all have a wonderful day and take care with this as we're all in this together. Goodbye.

For the Question of the Week, can AS be inherited.  Here is a link to the article  (https://www.nhs.uk/conditions/ankylosing-spondylitis/causes/) that I took some of the items I discussed for the question.

Everyone with Ankylosing Spondylitis has heard that “Women Don’t get AS” uttered by someone before. In this episode, I run down a list of 8 items from the article Ankylosing Spondylitis in Women: 8 Key Facts to Stop the Stigma (https://creakyjoints.org/education/ankylosing-spondylitis-in-women/)

This article by Lauren Gelman from Creaky Joints is really an interesting bit of information with links to all sorts of studies discussing AS in women more in-depth.