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Newly diagnosed with Shoulder AxSpa

Hey y’all! So I finally got some answers for my shoulder pain after years of chiropractors, orthopedists, massage, physical therapy, pain doctors, even the leading Thoracic Outlet Syndrome specialist here in Texas. All it took was a 876 year-old Rheumy doc, who’s a mashup between Mr. Miyagi and Yoda, to examine my clavicle X-ray and a simple blood test to confirm that I have this condition.
I’m an old ER/ICU nurse turned Chef, and have had this and SI joint problems going on 12 years. It’s only worsened in the last year and a half, and it progressed VERY quickly. I use humor (and CBD) to get me through pain, but I can’t help but be emotionally conflicted all the time. I go between being really scared, then relieved that I don’t have to “co-pay bounce” anymore. I am super tough…and stubborn…and only take a pain pill when I’m beyond all hope of pain relief. Yesterday I got a call from a nurse at the Cimvia support center.
I’m scared to try biologics. I’m scared that my career is going to dwindle. I’ve only been a chef for 4 years, and I have a GREAT job that I love. I’m scared that Dr. Miyagi-Yoda is having to treat this so aggressively because he’s concerned my shoulder is going to start fusing soon. But I’m so tired of morning to night pain.
I guess…maybe there’s someone out there that can make me laugh and reassure me that there is life to live while receiving biologics. Thanks in advance 💜

  1. - Thanks for responding - sorry to hear you are not feeling well recently. I sure hope the biologic kicks in for you soon. If it's the right one, you should see results within a month or two. Usually trials are 3-4 months on biologics, and if no results you can be switched to another. This is something you need to discuss with your treating physician. Being honest about how you are feeling and progressing is really important. Some use a notebook to journal about their health daily while on medication. Doing this you can really see if you are progressing to better health or remaining the same/declining.


    Terribly sorry to hear that you are mourning the loss of your "old" Mom due to RA. It's really difficult to watch a parent deteriorate. I too watched my father decline with disease (undiagnosed AS), which was terribly difficult. He slowly lost his abilities over the years and was in severe pain 24/7 prior to losing him. He didn't use medications but used alcohol to numb himself out. He has since passed, and I miss him dearly.


    Glad to hear your mom is going to get a second opinion. Supporting someone who is ill as well as dealing personally with a chronic illness is a tough situation. Hopefully, she can get on a newer medication that is more effective for her mentally and physically and she gets some faculties to return. This would be a relief for you.


    I understand your concern about side effects from Cimzia and hope that they are minute. I didn't get too many side effects from the first 4 biologics I was on, they just did not work well in decreasing my pain and fatigue. We just kept trying. I would take one for 3 or 4 months, and switch if I saw no or slight change, or only 1-2 degrees of decrease in pain. My physician wanted me down to 5 or below on the pain scale - but was consistently 7-8.

    1. Welcome !


      So glad you found us. I am sorry you've been suffering for so many years without answers. As for the "Copay bounce" - I've spent thousands doing this, (or so my checkbook feels it has) I am so glad I am over this as well going from doctor to doctor looking for answers. It's pretty typical, though as AS is a slow-developing, long-term chronic illness where in the first years there's very little evidence on imaging of its presence or progression. Inflammation and pain are pretty typical during this time period and many times this discomfort is mistaken for other conditions. I am sure you've gone through this ... "oh it's just ... " or "There's nothing wrong with you."


      Biologics are a great way to fight the body's inflammation that has built up over the few years you've described the pain, and they slow the progression of the disease. Here's a link to more information on biologics. https://axialspondyloarthritis.net/treatment/biologics-biosimilars I have been on a few different ones and finally found the one that works best for me. I hope you find that Cimzia is the biologic that will help take away the pain and fatigue you are going through. Here is a link to the web page for more information on this specific one. https://www.cimzia.com/


      Once you start seeing results hopefully you'll start to feel better and continue on with your career. Sounds as if you are very determined not to let this disease run your life, and won't let it get in the way of progress toward bigger and better things.


      So glad Mr. Miyagi-Yoda was able to detect and help with this condition.



      1. thank you so much for your reply! That meme is hilarious! And thank you for the links. I’ve been on the Cimzia one and have been able to look around a bit. My mom has had RA for about 15 years and they’ve had her on methotrexate for the entire time. I hate it. I’ve seen her go downhill to the point where I’ve had to “grieve” the loss of my old Mom, especially her mental state. I’ve been on her case for at least 5-6 years about changing meds because well…I have more experience with methotrexate as an ER nurse than I’d like to discuss. She now has an appointment with Dr.Miyagi Yoda to get a 2nd opinion! I guess I’m just determined to not let this disease get ahold of me—no, to not DEFINE me— based on personal familial experience. I’m definitely needed and respected at my job, which is the pastry chef at a Big 12 University football stadium. I’m scared I’ll be calling in sick from the after effects of the medication etc. How long did it take to “feel” better after you started your biologics. Even just lowered your pain scale by 1? I’ve got a high tolerance but days like today…I’m just not doing well. I don’t let it show but my coworkers know

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