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How are everyone’s treatments going?

I’m struggling to find the right treatments to manage AS. I do also have RA, so I’m not sure if that’s the reason. But as far as I’m told the same meds that treat my AS treat the RA.

I’m wondering what everyone’s tried. I have a few rheums, plus my gastro doc working together struggling trying to figure out why I’m not responding. It’s been almost 2 years. And my AS and RA have progressed so much and I have frequent bad flares.

I’ve been hospitalized even in summer because I lost the ability to use my legs. I was paralyzed for almost 2 months. Then slowly 3rd month started getting function back. Docs think it was medication-related, guillain barre syndrome, or because my spine was so inflamed at the time that it compressed it so much that it affected my legs.

I just signed up on this. I’ve never been part of a support group. I’m not sure how this works. But I’d love to hear back from ppl❤️xoxoxoxoxo❤️

  1. Hi Kory,
    I'm newly diagnosed with AS, and am still waiting to see a rheumatologist for a treatment plan, but wanted to get on here to say I feel your pain, and I hope you find something that works soon!

    1. Kory- are you still on the site?
      Sorry to hear about your experience, I can definitely relate with the extreme spinal inflammation. I too Jane had my legs turn off on me twice, luckily mine only lasted a few hours each time. Since getting better treatment for inflammation from my rheumatologist I have not had my legs turn off, but they still both go numb occasionally.

      What have you tried to help so far?

      1. Hi☺️I kinda lost interest in the site cos there wasn’t any response for long time. But I will be back on now that I see there are ppl active. How are you? How’s things going with your treatments? Pain management?
        I’ve kinda come to a head with AS treatments. I have lupus, and AS. They’re contradicting diseases in treatment. Biologics meds help stop Progression of AS. But make lupus flare. And i have SLE, systemic organ lupus. Affecting my heart and lungs. My doc said he took oath “do no harm” so to treat AS would be putting my organs in danger. In the last month I went thru a deep depression. Cos to me the way it sounded was my options are life threatening organ lupus issues or disability in wheelchair cos my AS is progressing fast. And affecting most my joints. I have spurs all over. Even my small joints are affected. And this was very hard for me to accept cos I have an aunt who ended up in a wheelchair before the age of 40. Has a metal spine, metal all over. What I was told. I don’t ask her, but I do see her. So mentally I took this news of not treating AS very hard. But my doc yesterday told me he’s gonna aggressively treat lupus first. And once he feels comfortable hes suppressed all the symptoms. My cardiologist and lung specialists give it a go. He’ll again try biologics. So that gave me bit of hope mentally.

        So what’s your story?

        1. Hi Kory,

          I'm glad you're still able to have some hope when dealing with an incredibly tough situation. Please keep us updated on your treatment... I hope everything goes as planned! I totally understand how this disease is tough mentally... it can be really scary. Talking about it helps.

          I'm very fortunate because my treatment (biologics and NSAIDs) is going well at the moment. For pain management I have to move and exercise daily or else the pain gets worse. I have had AS for almost 3 years now (started at 18, now I'm 21).

          So glad you've made your way back to this site; it is probably more active now than when you first joined! Feel free to reach out at any time, we are here for support.

      2. Hi☺️Sorry I stopped coming on this cos it seemed to not be an active site. But now see it’s back on... so sorry about ur diagnosis. It sucks. I hope you’re finding ways to deal with it nlt just physically but mentally. Mentally this can be rough. I responded to a reply above basically told my story. Or at least my diseases, my treatments. Except I left out that I’m on plaqualin and methotrexate and prednisone for my treatments. My doc isn’t comfortable treating my AS even tho it’s progressing fast cos of lupus. And my organs that are affected with lupus. Cos biologic meds make lupus worse😢...
        how are you? What’s your treatments? What’s your story?

        1. Hi kory,

          I have had to make difficult choices between treating AS and RA. I have found that having an excellent dialog with my rheumatologist is key to working out the best way to move forward. As you say sometimes the best treatments are not available for different conditions.

          I am so sorry you are dealing with these competing issues. I hope that you are able to find the best way forward.

          I hope you continue to visit and comment in our community. It is great to have you comment.

          rick - moderator

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