google-site-verification: google39d92523271df308.html The Ankylosing Spondylitis Podcast

The Ankylosing Spondylitis Podcast

Episode 25

full
Published on:

1st Dec 2019

10:12pm

Episode 025: New Guidelines for Treating Ankylosing Spondylitis

Read Show Notes

Hello and welcome to this episode of The Ankylosing Spondylitis podcast. My name is Jayson Sacco and I thought we would cover today some new best practices for rheumatologists in working with Ankylosing Spondylitis patients. 

Now these are updates that came about from the annual rheumatologist meeting that was held earlier this year. These are the guidelines from the American College of Rheumatology, the Spondylitis Association of America and the Spondyloarthritis Research and Treatment Network and they've updated their guidelines on the management of Ankylosing Spondylitis and Nonradiographic Axial Spondyloarthritis. 

First I want to touch on the question of the week. This one was kind of interesting. I saw a young lady post something on Living with Ankylosing Spondylitis on Facebook that she was having rib pain and was mentioning that to her rheumatologist, and they said that they thought it was unrelated to AS and there really wasn't anything that they could do for that rib pain. I started Looking through it I personally know rib pain can be an issue where your ribs attached to your spine, and also where the ribs come together at the front of your chest. Those areas are prone to inflammation and then again are prone to fusing. Everybody's going to get a different some people may have a lot of pressure and pain in the ribs. Others may have very little I've been lucky to have very little but I have had it and I know it's painful in the show notes. I'm going to have a link this was from posting I found from the UK Ankylosing Spondylitis Association, and they talk about good as your ribs can become a flame, the ribs can become a flame, you know, like I said, where they attach with the spine, and that can lead to stiffness and eventually fusion. If you have a doctor that's telling, you, ribs aren't generally affected or anything of that nature. You know, just a quick Google of rib pain and Ankylosing Spondylitis will bring you a number of articles. So remember that they can be affected One of the things you can do as a patient is make sure you're doing a lot of deep breathing. You're doing exercises to keep your ribs flexible, and even when it hurts. Keep doing that deep breathing. If you're doing swimming, it helps lightweight exercises, nothing heavy. You're not trying to build huge muscles. You're just trying to keep all that stuff around your rib cage fluid. The more you exercise your ribs, like anything else that deals with Ankylosing Spondylitis, the better off you'll be. So again, in the show notes, I'll have a link to this and you can read it. It's real short couple paragraphs long. 

With that, let's go on to some of the new guidelines for treating Ankylosing Spondylitis. The last time these were updated, actually drafted was 2015. In that four-year time period, quite a bit has changed, you know, a lot more information’s become available about the diagnosis and then just treatments evolved. There's more biologics that are available now and something to point out in here that I was kind of wondering about seems like they're actually starting to look at as well, these guidelines will be in the show notes (at end of this), I'll have links to these articles. These guidelines help to ensure that rheumatologists, healthcare professionals have current knowledge across the board about what are best practices for treating somebody with AS. 


There was 86 recommendations, we're not going to go over all 86 of them. There are really a few that I think are the real important, but again, the article I have links to those so you can go out and research them. They were again disseminated to rheumatologists but not only were disseminated by but we're coming together by the American College of Rheumatology, Spondylitis Association of America and like I said before the Spondyloarthritis Research and Treatment Network, really what they're trying to do is if they can get everybody kind of streamlined in the treatment, the whole goal is to get a faster treatment to people and not these stories that you might read online where a person you know, languishes for years trying to get some type of diagnosis. They're trying to come up with faster ways to track people, so the we get the treatment much earlier in the stages of AS and not later on in life. So as I said this the first time and updates have been done in four years and they address medication and non medication treatments, they look at as related comorbidities, the disease activity assessment, imaging tests and screening and then managing biologics and biosimilars, the main motivation for the changes, you know, as mentioned was the new treatment options that are available. There were also some clinical questions about the medication treatments as well as the use of imaging. The results of the literature review, were then debated by a voting panel that they have that works with looking at all this so everybody gets some input is really what it amounts to. So that ensures that these changes are based on good data and are worthwhile you know for all of us patients. 


So as I said there was 86 recommendations, patients can talk with their doctors about these new guidelines, but some of the recommendations I'm just going to read through these and I apologize, I'm going to not use the scientific name for Some of these drugs, I'm going to use the street names because honestly, I can't pronounce the scientific names, it'll end up sounding like a butchering with me trying to do that. Some of the recommendations were strong recommendation to treat adults with active AS who are taking non-steroidal anti-inflammatory drugs, may also start a Tumor Necrosis Factor inhibitor, TNFi.  


So that was one of the first things that they said is that they want to start off the treatments with TNF inhibitors. We see that fairly common because most people say, “My doctor want to start me off on Humira or emerald.” 


Second strong recommendation to continue treatment with the originator biologic for switching to a biosimilar drug for adults with stable as So basically, the way I read that is if you're AS is under control, and you're on Enbrel, let's say then the idea is to keep that treatment going and maybe some doctors were saying no switch to this or we'll switch to that or we'll move this will do that. I don't know, but this is trying to say why don't you just stay on the thing that's keeping it stable.


Third conditional recommendation to treat with a TNF rather than with a drug like Cosentyx, or some of the other ones that come along. They want to look like start everybody off with a TNF inhibitor first and then after that it's conditional recommendation to treat with say Cosentyx or Taltz if the TNF inhibitor doesn't work. 


Another conditional recommendation they made was to treat the patient with either Cosentyx or another medication called Taltz using those two over using Xeljanz. So basically, we're saying okay, if the TNF you know, Enbrel or Humira doesn't work then to try something like Taltz or Cosentyx verse jumping to Xeljanz. So it looks like Xeljanz has maybe been moved farther down the list of favorable treatments. 

Another conditional recommendation was against repeat spine radiographs. A standard approach for adults with active or stable non-radiographic axial spondyloarthritis who are receiving treatment. So it looks like they're saying, okay, we're just not going to do a whole lot of X rays, any type of imaging, I should say if everything seems to be going along with normal as treatment, another one is traditionally in favor of the use of sulfasalazine and limited clinical circumstances and then finally, MRI is not recommended to search for inflammation and patients with axial spawn to arthritis. So really, what does this mean for all of us? For some people, you know, it's going to be nothing like for me, for others, it might mean looking at other medications or fewer imaging tests, depending on what your doctor is recommending. 


Again, this is not medical advice, just talking about some of the items that are coming out. So really, it's going to still come down to your relationship with your rheumatologist and what he or she recommends that you do as you work for because these guys are guidelines are not blanket statements, your individual medical history and treatment responses Still going to dictate the treatment you get. Just overall I thought it was kind of interesting. I'll put these links out. 


There's an interview with a Dr. Michael Ward. He's the chief of clinical trials and outcome ranch at the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Man, that's a mouthful. He says, “we took the opportunity to revisit some previous recommendations for which substantial new evidence was available and also included new recommendations on some other topics such as imaging”. 


It's really great to see that there. Even though we might not think that it appears there's a lot going on behind the scenes, the doctors are still working on trying to figure out more and more about these conditions we deal with that are all interrelated to Ankylosing Spondylitis. So the big thing is going to be as I mentioned, with comorbidities is the ophthalmologist which I've mentioned in other episodes, make sure you have an ophthalmologist that's familiar with treating as because of the I write us and the conditions that you can get with there's also like I said, there was the question And recommendations for a is centered around the use of the IL-17 inhibitors which are like Cosentyx, Xeljanz. and then biosimilars, they're really looking at how everybody is affected and where I was saying that earlier, as I had mentioned that I had been on Enbrel then I switched to Humira and had very little long term success with either of those drugs, but then when I'm put on Cosentyx 5-7 years later and had great results with it for me so far, and I'm no longer allowed to take any NSAIDS due to kidney issues. So the Cosentyx has really been fantastic for me. And again, these are just guideline treatments. This is going to be a real short episode this week. And I hope you all have great luck in reviewing some of these and implementing them with your doctor. The whole key is to make you a more informed patient. So when you go to the doctor, you understand what he or she is, is trying to get at so that you can come to a better treatment plan because that's really what it's all about. Is getting you the best treatment plan you can have to mitigate some of the pain from Ankylosing Spondylitis and any other issues that you might be suffering from. So thank you again for listening. Hope you all have a great day and we'll talk to you soon. Bye


From Ankylosingspondylitis.net – New Treatment Guidelines for Ankylosing Spondylitis: https://ankylosingspondylitis.net/clinical/treatment-guidelines-update/

Episode 24

full
Published on:

24th Nov 2019

3:39pm

Episode 024: 9 Complications of Ankylosing Spondylitis

Read Show Notes

Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. I decided in this episode I was going to kind of revisit some of the areas that we had already touched upon and some issues I’ve been having with my right eye brought this upon. 

I started looking around I said, you know, I've kind of touched about all this, but I'm going to tie them into this package of nine possible complications that we can come into from having Ankylosing Spondylitis. The actual nine possible complications came from an article in Medical News Today that I'll have linked below. But a lot of these are all things that those of us that have Ankylosing Spondylitis need to be aware of, we need to watch out for this. 


If anybody's listening for the first time, Ankylosing Spondylitis is a chronic autoimmune disorder. Anyone that's diagnosed with AS needs to be aware of these complications, that it can present to our health, both physical health and mental health. 


There are a lot of things that we need to be aware of. So first, this week's Question of the Week, saw a post yesterday that kind of touched me it was one where the person said that they were really kind of feeling ignored by everybody withdrawn. No real social life, at times, maybe despondent, maybe it's a little touch, but I'm going to use that word despondent, many people and what some fantastic to see jumped right on and told this person, hey, you're walking around here, and I understand how you're feeling. But you know, chin up, all of that is great to support the person. I love seeing it. But this person's emotions were not wrong. As I touched on in the last one, they have to own their whole scope of emotions, and then deal with it in the best way that they can. So I hope this person gets any type of therapeutic help that they need, build a support network, even if it's support that you don't physically see the people but you talk to them online. All of that is Good because we know that this disease can really affect you socially. And overall it can just be a real, a real isolating type of item and we'll talk a little bit more than nine items. So anyway, I saw that I was really happy to see everybody jump right in and discuss with this person. So kudos to everybody that is listening that takes place at the forums participates and offers a friendly shoulder to cry on so to speak when it's needed. I really enjoy that about this community. We're going to look at the complications as we've said, Ankylosing Spondylitis you know as a type of arthritis, and if based upon triggering painful inflammation in the body, whether it be in the hips, the knees, the feet, the elbows, the, you know, ribs, whatever. As the condition progresses, if the inflammation remains unchecked, other complications can arise in our life. It's very important to get the inflammation controlled that can be done by diet that can be done by medication. or some combination of all of the above. If you're having questions, not sure where to start, talk to your doctor. These items I'm going to go across just so I can get this out there. I am not a doctor. This is not specific medical advice related to you. It's for informational purposes only. If one of these sounds like it's something that you are having a struggle with dealing with, or concerned about, consult your doctor talk to him or her so that they can help you work through the stages of what needs to be done to alleviate this problem or head off this problem. 


Number one, eye problems we all know about uveitis. I write on the type of conjunctivitis that you might get through having Ankylosing Spondylitis. As I've said in previous episodes, you really want to have now this really applies more to the United States because I'm not sure how doctors work in other countries), but if you have Ankylosing Spondylitis in the United States, you really want to have an ophthalmologist at a minimum on call. The ophthalmologist can usually, if you talk to them and say, “Look, I have Ankylosing Spondylitis, it can develop to iritis. There are times I may need to call and have an emergency appointment”. The doctor, the ophthalmologist should be well aware of that condition and be able to get you in quite fast though, they'll understand the need to get this treated quickly. So remember, if inflammation spreads to the eyes, it can cause symptoms, like where your eyes will get swollen, painful, red and puffy. You might think oh, I've got pink eye if you have as we go getting anything treated for pink eye, always just default right to uveitis and have the doctor treat you that way. Is there a prescription medications that they can provide to you get in there, get it treated, and don't let it go too far. 


Number Two, reduced flexibility. This is what I deal with. When I was a kid. The doctor started testing me and saying bend over and can you touch the floor. I couldn't now I'm lucky if I could just bend over and even a bigger challenges for me standing up straight. I covered this in a previous episode where I talked about exercise, do what you can, don't overdo it, but do what you can to keep your range of motion strong. Make sure to adjust for your posture, make sure that you're sitting correctly. If you have a job that requires a lot of sitting, make sure that they try to accommodate you with a better chair if available, or whatever they can do. My old employer had a whole ergonomics department, they would come right to your desk and measure the way you're sitting they measure your chair and my case I just had to provide a doctor's note based upon my disability and they went and got me a special chair to sit in which was awesome. The only part was that as people kept trying to take it, but because it was a unique chair, I could always go figure out who had it and we'll go back to my desk, make sure that you're adjusting for those things. If you have a home office, you know maybe you look at getting a good chair, whatever it is to make it better for you. 


Number Three tiredness or fatigue. One thing that will come across a lot and Ankylosing Spondylitis is fatigue. In my case, I was so tired, I'd moved into a new house and just a thought of unpacking a box, maybe sit back down on the couch and be exhausted need a nap. After working a full day. I just couldn't have the energy didn't have the energy to actually unpack. So I went to my doctor, and he started doing a bunch of tests on me obviously started off with a blood test. And he said, I'm going to check your testosterone. I said, Okay, I've never had that done. He checked it, and I was really low. And he says, there's your problem right there. Now, I don't know if that's as related. I can't say it is can't say it isn't. But I got the testosterone shots, and I'm still on him to this day. And it's been an amazing item for me providing the energy back that I lacked. So talk to your doctor. It could be vitamin B shots could be any number of things that he or she could detect and offer to help with some of the fatigue that Ankylosing Spondylitis brings in. You also may be prescribed biologics. The Enbrel’s and Humira has some of those by reducing the inflammation can then turn around and if the inflammation goes down, your body isn't fighting it so you're not as fatigued. So like I said, there's a, there's a lot of ways to address this one and then again, another option is on top of all these other ones is exercise. Keep all that in mind, talk to your doctor. But if you're tired all the time, there may be some very good ways to help adjust some of that and work with it. 


Number four, Osteoporosis. Osteoporosis is a bone disease that makes the bones less dense than normal, it occurs in the body loses too much bone or makes too little bone the most can become brittle and may break more easily. This is something that can develop in the spine of people with as the bamboo spine and so the risk of spinal injury becomes greater. You'll see this discussed online when a lot of people say I'm going to my chiropractor and there's others that say don't I personally don't go to a chiropractor and won't go to one because my spine is already fused. So you know, I'm not going to take the chance that even though the doctor may say that he or she knows what they're doing. They really do. So you know, this creates a lot of contention online. If your spine is not fused, yet chiropractor may work for you, if your spine is fused, you may want to stay away. It's really your choice and then according to a study and current rheumatology reports asked you a process frequently occurs in people with as even in the early stages, the disorder is a severe inflammation caused by as that is not to contribute to it. So, you know, again, talk to your doctor, let him or her discuss with you the options and what's best going forward. If you have been told you might be developing any osteoporosis to go along with it 


Number Five gastrointestinal disorders. I see this online with different people talking about different gastrointestinal disorders that they have developed. And again, current opinion rheumatology did a report that said up to 50% of as patients have inflammation, their gut inflammation in the intestinal tract and bowels can also contribute to issues like stomach pain, stomach ulcers, diarrhea, problems with digit digesting and more severe conditions can lead to something you know, like maybe Crohn's disease or any number of other items that I see people talk about. I've been fairly lucky and have not had any real gastrointestinal disorders. So knock on wood it stays that way. I do really feel for the folks that have it I that's one that has got to be real rough. 


Number six, increased risk of heart disease people with as may also be at increased risk of developing some heart problems, cardiovascular issues, that as contributes to include aortitis, aortic valve disease, conductive problems, ischemic heart disease, and cardiomyopathy. So taking preventive measures to reduce the risk of any cardiovascular symptoms or disease is important what those of us with as again, it goes back to what the heart disease regular exercise, eating a healthful diet are all part of a good treatment for people with as and to reduce the risk of heart disease. It also helps people to avoid tobacco use and maintain a healthy weight. So in my case, I don't use tobacco. So that's not an issue. The Healthy Weight has been my problem and I'm in the process of trying to lose some weight. So we'll see how that goes. 


Number Seven, this is one that relates back to the Question of the Week. Number seven is social unemployment problems, you know, with having Ankylosing Spondylitis should not always have any direct impact on employment, we know that it does. If you're unable to work for long periods of time, or if you're in constant pain, when you're at work, all those can make keeping a job much more difficult. Again, I'm going to use the state's here because if there's number of places that are at will employment, you know, if you miss work, they can cut you and they don't have to give any reason and it makes it harder for you to prove that there was a wrongful termination. So my suggestion again, I'm not a lawyer, but if you think that you're going to be missing time from any job due to your Ankylosing Spondylitis, make sure to go out and get the FMLA set up through HR Also, if you think that there's any contestable issues or contentious issues With your HR department, one thing to remember is generally with your HR less is more, they're there to protect your company, they're not there to protect you. So if you think that you're being treated in poorly or incorrectly due to your job due to your boss due to anything that's around the employment, your best bet is to always seek the services on attorney first and have them walk you through what might be the appropriate items to discuss with HR, what might be the appropriate items not to discuss, get an attorney, if you think there's any issues with losing your job, then there are a couple of rare complications and to be honest with you, I had never heard of these before. I'm not really affected by them, but I'm going to go over them. 


Number eight, and I'm going to butcher these names. So please, I apologize for this. I don't have a medical background. So saying some of these Latin terms always throws. Number Eight Cauda Equina Syndrome, inflammation that we all have with as could cause bony overgrowth and lead to an extremely rare condition called Cauda Equina Syndrome. This condition causes bone growth, which leads to pressure and swelling at the end of the spinal cord. The swelling can compact the nerves the lower back and cause symptoms such as pain and numbness, stinging or tingling sensations in the legs, inability to walk in incontinence, if left untreated Cauda Equina Syndrome can lead to paralysis and other severe issues. If you think you have that think there's something you might have talked to your doctor about it that was rare, so make sure that you're informing your doctor that you think you may have this


Number Nine Amyloidosis. I butchered that one, is caused by the buildup of protein called Amyloid in the organs; amyloidosis can cause symptoms such as weight loss, water retention, and tiredness. Again, this is a rare syndrome, rare complication. So you're having these issues, talk to your doctor with that amyloidosis. You might have any symptoms that resemble nerve damage, such as tingling in the hands and feet, and there are some medications that are used to treat this. So But again, it's a rare item So now that we've looked at these nine items, what are some of the treatments, these are going to be really basic. So the more in depth treatments you want to talk to your doctor about. 


Remember Ankylosing Spondylitis presents itself in a variety of ways. And even though we have the same disease, we don't always have the same complications. Everybody in this is different, which makes it so hard. So doctors are also going to prescribe a number of different ways to treat it could be assets to help with reducing inflammation, that's usually one of the starting points up to things like the various biologics that are out there that can help to control the inflammation and then reduce some of the progression of as not cured. I'm going to cure maybe taking you out of a flare, reducing or slowing down the progression alongside medical treatments. Doctors also might suggest that we do some physical activity, come up with a workout plan. If you're like me and you're overweight, start off with something simple, do what your body can do, but don't overdo it. Maybe it's physical therapy that the doctor puts you in. There's light stretching, get out one of those rubber bands. You know from like a Walmart or a Meijer or you know, Academy or whatever you have around that you can use just stretch your legs and stretch your arms, if that's the basics of what you can do. There's also that exercise like swimming, bicycle riding. If you can do that those all can help promote flexibility and reduce some symptoms. And then once you're done, use either ice or hot pockets on any of those to help reduce some of the inflammation. 

Overall, Ankylosing Spondylitis we know is complex disease disorder, and it could cause some serious complications for all of us if they're left unchecked. The great thing is I don't see a lot of people talk about not doing anything with it online. They're just curious as to what the best path is. And it's very hard for a bunch of people to tell you what you should do. That's not safe. Have your doctor tell you what you should do. But always be aware of any symptoms or side effects because you want to make sure you live a good, healthy, happy life. Find a treatment plan that works for you. Just go forward. Remember, we're all here to help each other and I really appreciate You're listening. It's fun to do these. I love getting the feedback from everybody. And I wish everybody just a great day and successful time in dealing with their Ankylosing Spondylitis. Thanks


Link to Article: https://www.medicalnewstoday.com/articles/317500.php

Episode 23

full
Published on:

17th Nov 2019

5:00am

Episode 023: Diagnosed with Ankylosing Spondylitis, Now What?

Read Show Notes

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be the 23rd episode already. This is fantastic. In this episode I'm going to talk about, you've been diagnosed with Ankylosing Spondylitis. Now what? First I want to recognize that it's just been amazing. The number of downloads I've seen coming through for November, is looking like it could top October, which was a record month. So thank you to everybody that's listening. Thank you for all the feedback I've been getting. We've also had some people checking out the show from a couple new countries, South Korea, Bulgaria, Singapore, and Honduras. So welcome to those new places, and also a flurry of people out of Ireland have been downloading the show. So to all the listeners, Thank you so much. So let's jump in and do the Question of the Week.

What was I going to talk about? Question of the Week. Oh, yeah. Brain fog. I don't know about y’all, but I've seen this discussed multiple times throughout the forums. I get these brain fog episodes. I get things like I can't quite comprehend anymore, and I myself get that. I do a weekly trivia game and there's answers that pop up that I know. I know them and I just can't think of them or I want to say something to somebody and I, I sit there and it just rattles around my head. I'm like, “I know the answer”, but why can't I get this out?

Well, forgetting names, losing words, trouble concentrating. You know, brain fog is common. It can be disturbing. I don't like getting in and I'm sure nobody else does. It can be thing that causes concern when you're at work, if you forget things, will I forget things? Did I forget something? All that can play into your stress related to work and maybe even trigger a flare if it gets too bad? 


A study done in 2018 that was on Rheumatoid Arthritis patients, not Ankylosing Spondylitis patients, but I think there are enough similarities that is of interest in that study found that they think that there's a connection between inflammation and cognitive dysfunction. The inflammation disrupts signals between pain receptors in the brain literally fogging up mental functioning. That's very interesting. So I'd be curious if anybody's brain fog gets worse during a flare, have you noticed it? Have you noticed in times of high stress, your brain fog gets worse? You know, now, I haven't had any writing or spelling issues result of that. I'd be curious to know if any of you guys have mine is just recalling certain things. My recollection of facts and figures gets real murky. 


There are also some medications that may potentially cause some brain fog. One person I saw blamed their brain fog on Humira. I don't know if that's true or not, that's just what I saw them saying. Other drugs, such as prednisone, it's put out there to reduce inflammation, but it can sometimes affect cognitive

Issues. Again, I found nothing that said these were long-term effects. They were more short term when. drugs were in your system. There's also some cholesterol lowering statins, which may contribute to brain fog. I'm on one of those. And that may also be part of the issue. See, there we go. Couldn't get the words out. 


I'm going to do this, I suggest you do this as consult your doctor. I'm not a doctor. None of this is, you know, hard and fast medical advice is just to make you aware of some issues so that you can bring these up and talk to your doctor about them. So you're not going crazy. Most likely, these are not long term permanent effects they may most likely are medication effects. So again, talk to your doctor, see what he or she says is the best course of action going forward. I've seen one person and this is only for states where it's legal, obviously, who swears by cannabis to control the brain fog. It's not something I've tried, but whatever works for you is the best. So make sure that you're getting a lot of sleep, stay organized, if it's affecting you, and a lot of different areas of your life, plan out your day if needed, and take time out. If you have to take time out to kind of step back, reset yourself, do a meditation, whatever it is to kind of calm yourself down and get yourself back into a spot where you can process information correctly. And now, let's go on to the rest of the episode. 


So you've been diagnosed with Ankylosing Spondylitis. Now what? You know, maybe you just received this diagnosis from your rheumatologist you've been seeing. This could be your first rheumatologist, could be second, third, or fourth one if you were having issues with any of them. They've given you, lots of information. 


There are some things you want to generally keep in mind when looking at Ankylosing Spondylitis. You know, when did you start to notice symptoms? Did you experience the pain for three more months? Do you have more pain in the morning or evenings? Can you exercise the some of the pain? Those are some things that the rheumatologist may ask. Those are things that you want to just kind of keep in the back of your mind as you work with your rheumatologist and maybe start to journal your experience with Ankylosing Spondylitis. So you get a better idea of how to get a handle on them. You know, once you've been diagnosed, the rheumatologist is going to also want to know stuff like family history, personal history, do a physical exam, imaging, like x rays and MRIs. And finally, blood work. Seems like every time I go into a doctor, they're drawing blood to test me to check how the medications are interacting with me. 

I was diagnosed in 1984 at the age of 14, and finally had why I had been in pain for the last few years. Being only 14, how can a diagnosis be processed by a 14 year old. When there was no such thing as the internet, there was no such thing as talking to other people that had Ankylosing Spondylitis. It was just here's what the doctor said, here's what you can take and come back in six months. So there really wasn't any way for my 14-year-old mind to process anything. I just said, okay, and went on with my life. As an adult, not sure how I would deal with that, especially now with the internet, which is great and allows you to connect with people research things, but you can also over research some stuff as an adult, you are going to think about this much differently than I did as a 14 year old kid.


Looking through the websites, as I was going on thinking about this, I found a great article titled, ‘Newly Diagnosed, Four Things You Should Know, by Lisa Marie Basile (I hope I said that last name correct). She is such a nice person. I've reached out and talked to her several times. Here is a link to this article. It's fantastic. So this is really going to be a summation of a lot of what Lisa said, her information is so good. 


Number one, your emotional responses to your diagnosis are totally valid. You know, you might be angry, you might be sad, you might be a little bit happy because you finally figured out what's going on and have a way to treat it. But any type of emotional response you have is valid because you're the one that has to deal with it, and your emotions could go all through those things in a matter of minutes, seconds hours. I was just a kid when diagnosed, so my emotional reactions were different.

As an adult, you don't like present you might have anger, also confusion, fear, whatever. They're all valid. Process them, deal with them as best you can. If needed, look into therapy if you need to go that route. There's nothing wrong with that. So remember, if anybody tries to tell you that your emotional responses are inappropriate based on you're diagnosed with AS that's not true.


Number two, use the internet to your advantage. But don't use it too much. As Lisa said, there are great support groups on Facebook dealing with Ankylosing Spondylitis. You can look up people on Instagram dealing with the same condition using various hash tags. If you need to talk to someone like a therapist, I encourage you to do that. Whatever makes you better able to tackle this diagnosis of Ankylosing Spondylitis, so that you can still remain a happy, productive, healthy person in whatever way or form or shape that is.


You know, when you get online there's all sorts of both positive and negative posts that you can come across. So, deal with those realize that everybody has Ankylosing Spondylitis differently and affects us all differently, but though it's the same disease, it affects us all differently. So somebody might be dealing with something a little more dramatic or, severe than your are. Take that for what it is. If you can offer support or you want offer support, feel free and go for it. If you can't, you know, just move on, we're all here to support each other as best we can. Also, listen to your doctor, as you're dealing with it and you're looking on the internet. There's nothing wrong with researching medications, researching side effects. But remember with medications, side effects are usually listed as potential side effects, not guaranteed side effects. I see this a lot with biologics as people talk about them. Many will get online and treat a biologic like they're going to get those side effects. You know, you may you may not everybody reacts differently. Is it important to know what the side effects are? Probably. Again, I'm not a doctor; discuss it with your doctor. 

When I was put on a certain biologic, I never even thought to ask what the side effects were because honestly, I didn't care. I had so much pain that any side effects could be dealt with. I was just looking for something to help try and ratchet back some of the pain I was dealing with.


Number three, keep moving and stretching as much and as often as you can. Anglo spondylitis isn't a disease you know that will require you to exercise to fight its progression. The more exercise you can do, the better. Don't go out and go crazy without first discussing it with your doctor to find out what he or she recommends is best for you to do. I am a perfect example of what not exercising will do. My back is seized up. Exercise wasn't discussed much, you know what was always said was deep breathing. I've had multiple hip replacements, which limits the exercises I can do, but I wish I would have started this 30 years ago. I now do some limited push-ups, meditation, I try to do some yoga, but if you're much more able bodied than I am, keep that going. You know if you're in pain and all you can do for the day is walk, walk. If it's walking around the block near your house, walking down your driveway, or just walking across the house. It doesn't matter anything to keep moving as good. As I've said in other episodes, when I watch TV, in between the show like when the commercial break comes on, that's what I do push ups.

Goal is 10 push-ups. When I get 10 push-ups done during commercial break, which is easy to do, then I'm happy. That's some movement for me. You can set up whatever works best with you and your, with you and your doctor. Look into yoga, there's lots of yoga videos on YouTube. If you're in a more metropolitan area, there's a ton of yoga classes you can look into whatever works best for you. Some people you're going to see, especially if you're newly diagnosed, you just see that they're able to do really heavy exercise, you know, CM, weightlifting, all this crazy stuff that I, I wish I could do, but I can't. Before you jump in and say, Man, I'm going to run to the gym and become a power lifter. Again, I can't emphasize enough, talk to your doctor, let him or her tell you that those are the exercises that they want you doing. And they think that those are the best to help keep you going. Do you know but at the same time, do what you feel comfortable with or cause you a lot of pain. You know, ratchet up back and do what you can do without putting yourself in excessive amounts of pain. 


Number four, not everyone will understand your perspective. You may look healthy and normal on the outside, but some people won't understand that. It's really an invisible illness and effects mostly stuff on the inside. Again, I'm a little bit different because of my lack of exercise and hip replacements. When I walk, I walk with a cane, I'm hunched over, I have a brace because of a drop foot. People can tell there's something wrong with me. But they can't tell that what. 


I pulled into a handicapped parking spot, because from the waist up, everything looks fine. As I'm sitting there in my car, and I have had people come up to me in the handicapped spots and knock on the window and ask why I'm parked there. They're thinking, I'm assuming or thinking that I may have dropped somebody off that I'm parking there illegally. Whichever, is it right of them to do? No. But they do it. I can't control others actions. I've gotten out of the car before with my cane and then said, Can I help you and that usually shuts them down pretty quick and gives an apology and they walk away. But you have to handle it. You're going to have people say, maybe it's a fake illness. Some of the worst things is maybe your family, your spouse, they may not understand what you're going through, share this podcast with them. Let them hear from somebody besides you that this is not a fake illness, that it really is something you're dealing with, so that they can better understand why there's those times those days when you're in a lot of pain. You know, you wake up in the morning and you might see your spouse and you your body feels good. You take a shower, everything's fine. And when you get home that night, you're stiff, you're sore, your spouse wants to go out, and you’re just burned out. You can't do it. It's caused all the fatigue in the world to you. They get upset with you. That's going to happen. It happened to my last marriage. She couldn't quite understand why I was dealing with what I was dealing with. She gave it a good shot. I can't critique, or I can't say negative that way she tried, but it was still very hard for her to understand. So, you know, build a support network if your family's not helping or able to better provide that support network for you. Join one of the Facebook groups. There's many of them that deal with Ankylosing Spondylitis. Just type that in the search on on Facebook and you'll find all sorts of groups with a lot of really good people out there.

You know, like I said, share this podcast with them.

Anybody that's not believing you and, you know, just do the best you can do every day. Be the best that you can be. You know, seek out the support groups. There's depending on where you're located at listening  there's national Ankylosing Spondylitis organizations like Spondylitis Association of America here in the United States. There's also the Canadian Spondylitis Association, the Australian Arthritis, which deals with Ankylosing Spondylitis as one other items. So there's a bunch of them. I'll have links in the show notes to the different national organizations that I know of. Look into those and see if one of those provides any local support groups for you.


It's not easy. You know, while I'm very sorry that you were diagnosed with Ankylosing Spondylitis, it's also not a death sentence. It's not the end of the world. You just have to learn to adapt, and then overcome.

I know that might sound easy and You might think this guy's nuts. How am I going to overcome this? You'll find a way I have faith in you make sure that you can. I have faith in you, I think you'd be able to do it just fine.  Make sure you go out and find me on Instagram at @ as_podcasts. And I look forward to talking to you in the future. Bye!


How Doctors Diagnose Ankylosing Spondylitis: https://creakyjoints.org/doctor-patient/how-ankylosing-spondylitis-is-diagnosed/


Spondylitis and Brain Fog: https://www.myspondylitisteam.com/resources/spondylitis-and-brain-fog


Spondylitis Association of America - https://www.spondylitis.org


Canadian Spondylitis Association - http://www.spondylitis.ca


National Ankylosing Spondylitis Society - https://nass.co.uk


Arthritis Australia - https://arthritisaustralia.com.au/types-of-arthritis/ankylosing-spondylitis/

Episode 22

full
Published on:

10th Nov 2019

2:00pm

Episode 022: Grieving For My Old Life

Read Show Notes

I apologize about my stuffiness in this episode. My allergies were really bad…

Hello and welcome to this episode of the Ankylosing Spondylitis podcast. It's really great to have you all back for another episode. This is going to be an interesting one; it's going to get a little deep, maybe a little heavy. First I want to start it off with an email that I received. This person named Shawn wrote me and said, 

"Hey, Jayson, I know it's late at night. I want to let you know I myself have Ankylosing Spondylitis. Diagnosed last year, May of 2018, I found your podcast and a Facebook thread and I've started listening to your show on Spotify. I've downloaded every episode and I'm listening to them all. Now there are so many things I can relate to that you speak about and I really appreciate the awareness you bring to our disease It really helps me to keep focused and not feel alone, (there’s that key thread not feel alone). Just wanted to say thank you for doing what you do. And hopefully we can keep in touch much respect for me a 41 year old male from Canada with AS.”

He and I traded a few more messages afterwards and discussed a little more in depth what he was going through and some of the similarities even though he was just recently diagnosed. Some of the similarities of things that he had encountered that I'd encountered were really interesting. It was great to talk to Shawn. 

Anybody that reaches out to me, I hope I've responded back to you. If I haven't, I really apologize and send me another message because, I'm not sure how I missed it and I apologize if I missed any messages from anybody. 

So back to the episode I want to start off first with the Question of the Week, when I look at the forums, I see a lot of talk about 

“I have AS and my parents, my spouse, my co-workers, they all just say stay positive. If you keep a positive attitude, you can overcome it. If you have positive thoughts, they can help you through some rough times.”

I came across an article that was pretty interesting, written in Healthline by Angie Ebba from June of 2019. The article and there will be a link in the show notes was titled “Stay Positive’ Isn't Good Advice for Chronically I’ll People. Here's Why.” Now, let me preface this with a few things. I tend to try and always say, if anybody asks me how I'm doing, “I'm doing fine, doing great.” You know, those are just the standard go to responses. Everything's good. We all know that with a chronic illness, we all can suffer from depression. It's just normal because you're constantly in pain. And you look around co-workers, friends, spouses who aren't dealing with these items, and it can just really play with your psyche and put you in a depression. As we look at that, if we have a spouse say, “Just stay positive!” or a parent that says “Just stay positive”, You know, you get through this, we know that they don't understand the pain and the issues of what a person with chronic illnesses/ chronic pain deals with. I want to believe that they're not saying that to be mean, or know what to believe that they're saying that to really be helpful to you, really to try and bring your spirits up, but I don't know if that works for all of us. 

I know for myself, it took me a long time to come to grips with the pain that I deal with. After my last hip replacement on my left side, (it was the third hip replacement), the doctor had damaged the nerves in my leg, and I now have a drop foot on my left leg and no feeling from the knee down. I went through all the various emotions. I used to like to hike, I was semi active. I liked to walk around, all the things that we take for granted. And now I walk with a cane and for two years, I was on crutches. So I went through all the emotions of grief about I couldn't do what I wanted to do, and everybody would just say stay positive.

I really tried hard not to be snarky attack backlash out at anybody. I wasn't always successful. There's many times I had to apologize for what I had said or done in my actions that were 99% of the time driven by pain. Let's face it, we're all in pain and it affects our emotions. So I also know that it affected my work. There was many, many things that I know I was passed over for because of my “attitude”. It wasn't that I was unwilling to do things. It was just generally that I was in pain. My doctor had tried to talk me into going on disability years ago and I fought him and held off and held off. And it really was a detriment to myself, I should have gone out earlier. 

I see people online posting, “My mom asked me how I'm doing, I tell her I'm in pain and she says, just be happier your alive or put on a happy face”, or whatever the heck they say. In this this article, the author talks about how that really invalidates the feelings that we as chronic pain sufferers have, or may invalidate your feelings. She wrote (this is what touched me), 

“When I'm on day three of a flare up, when I can't do anything but cry and rock because the meds can't touch the pain. When the noise of the clock in the next room feels excruciating and the cats fur against my skin hurts - I find myself at a loss.”

That was very familiar to me and when you're in those levels of pain, no amount of positive thinking, no anything is going to help with that until that flare subside. 

You know, I wish that more people that don't have as would listen to the show, to kind of understand what goes on with our bodies. I would encourage you, if you're listening to this and you have Ankylosing Spondylitis, share these episodes. Share all these episodes with anybody, your parents, your spouse, significant other whoever so that they can understand or maybe better understands what you're going through. So as we look at that and try to stay positive, you know, if somebody in the AS community (Ankylosing Spondylitis community) came up to me and said, “You know, keep your chin up, keep going, keep fighting”, that doesn't really tend to bother me, because I know they're going through what I'm going through, and I appreciate that that's actually maybe them checking in on me and making sure I'm okay. 

Sometimes though, when it's somebody that doesn't have Ankylosing Spondylitis, and they're all kind of peppy, they say, “Well if you think more positive, everything will be more positive”. That's sometimes where you want to really just go off on them and I found I've had to really watch my tongue and pull back and not lash out at people. 

So overall with this Question the Week, just keeping a positive attitude really is not always what we need. We need to be allowed as somebody with Ankylosing Spondylitis, as somebody that's in chronic pain, we need to be allowed to be ourselves to be authentic to present to the world that there's some days weren't pain, there's other days we're in less pain, we can only do what we can do we need to be understood. Not coddled, not baby not looked down upon. Just understood! That's all that I ask for with people in my life, is that they just understand that there's days when they may come over to my house and it's not the cleanest, you know, because I don't feel good and cleaning takes a lot of energy, a lot of time and it's just me. 

Overall, yes we can have positive energy on the good days, on the bad days, we just need to realize that we have got to fight through them. We're all here together, no need to bicker with anybody online. That's a waste of energy. Just do the best you can do.

Please don't hesitate to reach out to anybody that's, you know, in your support network, even reach out to myself if you just need to bounce a message off of somebody or to vent. We're all in this together. And we're all trying to help each other through this journey of Ankylosing Spondylitis. 

For this main part of the show, I wanted to talk about something that I see quite often, and I don't know if there's a proper way to discuss it, but it's really about grieving for what we were before AS, before Ankylosing Spondylitis, if we can remember that? What a chronic illness like Ankylosing Spondylitis does. 

After my last hip replacement, I was very angry and in denial.  As I've indicated before, I've been dealing with Ankylosing Spondylitis for a long time. When we have the loss of who we were, we start to grieve for that, and we can become angry. 

My losses came over a number of years due to the age that I was when diagnosed. I was 14 and really my only dream when I was a kid had been to join the military. That's all I wanted to do. I didn’t think about college, I didn't think about anything. I wanted to join the military and see the world. By the time I was 18, my Ankylosing Spondylitis was so bad, I was not eligible to join the military. I could barely walk straight half the time so I went to college, drifted around a little bit and found a job I thought I liked and finished out my career doing it, but it wasn't what I wanted to do. So it was just what I ended up doing. 

Then in my 30s when I started to become a father my Ankylosing Spondylitis was bad at that point, and I was not getting any treatment for it. This was before biologics existed and I really was just taking ibuprofen and this led to a miserable marriage for me, for my ex wife, and most importantly, for my kids, it was just not a good situation all the way around and to this day, it affects the relationship with my kids, and it took its toll on all of us. 

By the time I got to my 40s, I was starting to seek treatment from a Rheumatologist. Again, looking to see what ways to mitigate the pain and get this AS under control if possible or at least slow it down some. Also in my early 40s, I had two more hip replacements on my left side. And that was the point that I lost the use of my lower left leg. My ability to walk without the use of aid, you know, like a cane was gone. My ability to just move and do what I wanted to do was gone. I had to deliberately think about each step so that I didn't fall with each step. These, and many smaller episodes, were all losses. You know, I had to come to grips with each of those losses and their old way it's been for decades of my body slowly quitting on me with each of these losses. You know, to me representing that each time that my chronic illness Ankylosing Spondylitis told me it was the boss and there was no cure. It was no getting better and I had to come to grips with how to become the boss of it again, my old self was gone. 

I know I had to come to grips with the new man that I was. I also had to come to grips with what I was and was not capable of doing as a man. All of those played with my psyche and worked against me many times. It would destroy not only the physical person that I was, but it also destroyed my mental state many times and each time I would have to reevaluate what I now felt my worth was to my kids to my job, to potential women in my life, and finally to myself. It wasn't till much later on that I realized that this was not the proper order to capture those in to become a healthy person again. 

As we deal with loss, there are five stages of loss. We all go through these and we deal with them in different ways, because Ankylosing Spondylitis takes things from us. It takes who we were. It robs us of them. And so with loss, there are five stages:

1.    Denial

2.    Anger

3.    Bargaining

4.    Depression

5.    Acceptance

It took me a long time to move through stages one and two, I didn't go through them easily. They lasted the longest for me, I fought the most in those stages which created lots of difficult situations in relationships and work. I know it affected a lot of my stuff at work, and cost me the ability to move up and move around at my place of employment, it's just what it was. 

It finally took lots of counseling for me to realize that I had to accept and move through each one of those steps. That I had to do it in a less destructive way than I had been doing it and to come to grips with things. For you out there, you may be in step one, step two, step three, step four, step five, everybody's different as we fight each of these battles with Ankylosing Spondylitis, and we’re going to move through each one of them differently. 

As the author of this article mentions, she sat there looking at her closet full of shoes and purses and stuff. And in her mind, she could see each spot she had worn some of these items and what they had meant to her and how she was no longer was going to be able to wear these due to her chronic illness. 

I'm sure all of us go through those thoughts in different form or fashion and it really can affect who we are and what we are, if we let it. I think if we can get through those five stages in a healthy way, and get to the acceptance, that's where we get back control of Ankylosing Spondylitis and we're in charge. I can't tell you how to go through those stages. I can't tell you what's the right amount of time to spend in each stage; we're all different. 

What we can do though is support each other. If you are having a rough day, say you're having a rough day. Build a support system, contact them, have them check it on you, check in on them. It goes both ways as we all deal with these things that AS throws at us. We don't know when we're going to lose something, to lose some ability that we always just did, whether it be to just go out and mow the grass and now I can't walk and do that. I used to love to do this or that. We don't know when we may lose those abilities, but once we do, it can really affect our mindset. 

So I really hope everybody will try to build as best a support system as they can. One, which will be there for others with Ankylosing Spondylitis. If people are being there for you, I hope you're there for them when they need it. 

In closing, I know I want to keep these episodes kind of short so that you can listen to it easily. Remember that as you go through, whether you're wearing work boots or high heels, if you're a woman, replace those with comfortable shoes, a cane, a walker, whatever it takes to make you the new person that you are to be happy and healthy and excel at what you can do whatever that may be. 

If you're a mother excel at being the best mother, you can know that you have limitations. Show your kids that you have those limitations, and they'll grow up understanding, working with you on those limitations and helping you. If you're a father, be the best father you can. Take it from me, they(kids) grow up so fast and there's only a certain amount of time that you get to spend with them when they're little. As a father, try not to lose any of that because it's just something you can never get back. 

I hope everybody has a great day. I really appreciate everything that you y’all do. So again, thank you and have a great day.

References:

‘Stay Positive’ Isn’t Good Advice for Chronically Ill People. Here’s Why – Healthline.

Grieving for My Old Life After a Chronic Illness Diagnosis - Healthline

Episode 21

full
Published on:

3rd Nov 2019

4:33pm

Episode 021: But Women Don't Get AS

Read Show Notes

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.

Show artwork for The Ankylosing Spondylitis Podcast

About the Podcast

The Ankylosing Spondylitis Podcast
A podcast for people with Ankylosing Spondylitis
A podcast for people with Ankylosing Spondylitis. I am Jayson Sacco, a 34 year plus Ankylosing Spondylitis survivor. With this show, I want to bring the AS community together and talk with doctors, organizations, and individuals all dealing with AS.

About your host

Profile picture for Jayson Sacco

Jayson Sacco

I host two podcasts, the first is Outdoor Adventures with Jayson where I discuss hunting and fishing topics in America and around the world. The second show is The Ankylosing Spondylitis Podcast. This show deals with the autoimmune disease I've been dealing with for 35+ years.