5 ms·

I have ankylosing spondylitis, a form of arthritis that mostly affects the spine but for me also affects my other joints. I used to work out constantly in high

by wpasc 6y ago

I have ankylosing spondylitis, a form of arthritis that mostly affects the spine but for me also affects my other joints. I used to work out constantly in high school until it got worse in college and I could no longer tax my joints that way. I live with it by trying to do as many healthy habits as I can and reducing stress as much as possible. Healthy diet, good sleep, meditation (<- massively helpful to me), physical therapy (the gentlest exercises I can do without causing pain to any of my joints). I also just try to be a bit kinder to myself. When I was younger and unaffected, I was certainly more arrogant about life and pushed myself to the limit in a variety of facets and took it hard when I didn't achieve something. Now, I try to live the healthiest and happiest life possible and not get angry at myself when I cannot focus or am tired. I live with pain in my joints everyday, but I still consider my condition mild compared to many who have autoimmune arthritis. I just try to live the healthiest life I can and remain hopeful for a better treatment in the future. It's being working well so far :)

injidup 6y ago
Hi there, Really sorry to hear about what you go through. I was diagnosed with AS almost 15 years ago. Not sure what country or health system you are under but I'm in Austria, and treated with a medication called Simponi. https://www.simponi.com/ankylosing-spondylitis https://www.simponi.com/ankylosing-spondylitis. It's a TNF-Alpha blocker and as far as I understand it damps down the immune response in certain cells that cause the inflammatory response. It's pretty good stuff. It's not 100% effective and I'm not cured and I have my bad days. I had to go through a few hoops to get on the stuff but the health system in Austria is pretty good. I'm also very active and do most stuff I want to including surfing, snowboarding, dancing, and hiking decent mountains. There was a time when I stopped and thought it was all over but in the end I said fuck it. I'm going snowboarding and I'm going to make sure I'm healthy enough to do it. Most mornings I wake a little stiff. Two days surfing in 8 degrees C water will do that ;). But doing some stretching and relaxing before hitting the keyboard and coding can loosen me up for a days work. I wish you the best of luck and health managing your situation. Regards
- mattkevan 6y ago
  Sorry to hear what you’re both going through, arthritis sucks. I was diagnosed with psioratic arthritis a few years ago. It’s well managed with Humira, a similar biological treatment which is thankfully free in the UK. However I’m still in pain most of the time and it occasionally flares up. Those days I feel incredibly tired and awful all over. Find it hard that I don’t know on any day whether I’m going to be okay or not. Not sure if it’s the same with any other types of arthritis but the thing I’ve found that makes the biggest difference is exercise, especially on those days when I’m feeling terrible. Used to go to the gym pretty much every day, but post COVID it’s hard to do a similar amount of activity at home. Hope you both continue to manage your conditions, it’s not always easy.
- wpasc 6y ago
  Hi, thanks for your reply and also sorry to hear that you're dealing with AS. I'm in the US but I have good insurance. I'm very familiar with TNF-Alpha inhibitors as I have tried several. I started on Remicade which actually worked, but my rheumatologist at the time foolishly switched me to Humira for the sake of convenience. Once I switched, it did not work anymore nor have I had any response from a TNF inhibitor since (switched back to Remicade and also tried Enbrel). I switched to a better rheumatologist who explained to me that if you start and stop a TNF inhibitor, they may never work again as your body adapts to the medicine. I don't mind though, I have health anxiety and got a few weirds symptoms and infections on the TNF inhibitors. Many patients lives are changed by TNF inhibitors and those therapies are game changers in rheumatology. For me, however, the medicines scare me because of the side effects I had and don't work anyway. I also tried sulfasalazine but had the rare side effect of falling white blood cell counts. Given the level of my disease activity which has been radiographically slow and that my day to day pain is manageable, I prefer to be off medicine and deal with the pain. I still love to ski when I can and will still do those activities which bring me happiness (hiking, dancing, etc.). For me though, I get tendonitis when starting or attempting really any form of regular exercise. Thanks for your reply and I wish you the best in your treatment.

by wpasc 6y ago

injidup 6y ago

Hi there, Really sorry to hear about what you go through. I was diagnosed with AS almost 15 years ago. Not sure what country or health system you are under but I'm in Austria, and treated with a medication called Simponi. https://www.simponi.com/ankylosing-spondylitis https://www.simponi.com/ankylosing-spondylitis. It's a TNF-Alpha blocker and as far as I understand it damps down the immune response in certain cells that cause the inflammatory response. It's pretty good stuff. It's not 100% effective and I'm not cured and I have my bad days. I had to go through a few hoops to get on the stuff but the health system in Austria is pretty good. I'm also very active and do most stuff I want to including surfing, snowboarding, dancing, and hiking decent mountains. There was a time when I stopped and thought it was all over but in the end I said fuck it. I'm going snowboarding and I'm going to make sure I'm healthy enough to do it. Most mornings I wake a little stiff. Two days surfing in 8 degrees C water will do that ;). But doing some stretching and relaxing before hitting the keyboard and coding can loosen me up for a days work. I wish you the best of luck and health managing your situation. Regards

mattkevan 6y ago
Sorry to hear what you’re both going through, arthritis sucks. I was diagnosed with psioratic arthritis a few years ago. It’s well managed with Humira, a similar biological treatment which is thankfully free in the UK. However I’m still in pain most of the time and it occasionally flares up. Those days I feel incredibly tired and awful all over. Find it hard that I don’t know on any day whether I’m going to be okay or not. Not sure if it’s the same with any other types of arthritis but the thing I’ve found that makes the biggest difference is exercise, especially on those days when I’m feeling terrible. Used to go to the gym pretty much every day, but post COVID it’s hard to do a similar amount of activity at home. Hope you both continue to manage your conditions, it’s not always easy.
wpasc 6y ago
Hi, thanks for your reply and also sorry to hear that you're dealing with AS. I'm in the US but I have good insurance. I'm very familiar with TNF-Alpha inhibitors as I have tried several. I started on Remicade which actually worked, but my rheumatologist at the time foolishly switched me to Humira for the sake of convenience. Once I switched, it did not work anymore nor have I had any response from a TNF inhibitor since (switched back to Remicade and also tried Enbrel). I switched to a better rheumatologist who explained to me that if you start and stop a TNF inhibitor, they may never work again as your body adapts to the medicine. I don't mind though, I have health anxiety and got a few weirds symptoms and infections on the TNF inhibitors. Many patients lives are changed by TNF inhibitors and those therapies are game changers in rheumatology. For me, however, the medicines scare me because of the side effects I had and don't work anyway. I also tried sulfasalazine but had the rare side effect of falling white blood cell counts. Given the level of my disease activity which has been radiographically slow and that my day to day pain is manageable, I prefer to be off medicine and deal with the pain. I still love to ski when I can and will still do those activities which bring me happiness (hiking, dancing, etc.). For me though, I get tendonitis when starting or attempting really any form of regular exercise. Thanks for your reply and I wish you the best in your treatment.