4 ms·

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

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.

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.