Lupus or not Lupus?

@emo - that's where I'm at as well - seronegative, but with some overlapping symptoms not necessarily associated with Spondyloarthropathy. I have relentless back, hip and sometimes shoulder pain. May I ask what you're on for it and whether you feel it's working? I have tried Humira, Enbrel, Rinvoq, Orencia, Rituxan, and Cosentyx infusions, but I have never been able to get off steroids successfully without a severe flare (I take Medrol every day). My rheumatologist just suggested I try Remicade as it has more flexibility in dosing (up to 4 times the initial dose) and there is flexibility in how it's given (it's supposed to be every 8 weeks, but the infusion can be every 6 or 4 weeks). I'm hoping this is the one, but then again I hope every one is "the one!" I'm not ready to give up just yet, but I am running out of options.

I was going to say that it's hard to believe you were misdiagnosed at Mayo, but it's not really all that hard to believe as it took 25 years to figure out that the root cause of my back pain was inflammatory. I saw countless orthopedics, spine specialists, chiropractors, physiatrists, and physical therapists during that time, and every one of them misdiagnosed my crippling back pain. So many of these autoimmune diseases mimic something else or don't show up on blood work so it makes it that much harder to get treatment. I hope you are feeling well and your symptoms are being managed. I would love to hear if you have any other suggestions that you feel have worked well for you.

Best, Pauline 🙂

It is hard when it feels like no one is listening and no one is ever going to help you feel better. If you have symptoms and feel like you're being dismissed, it's time to try another doctor. It took 25 years to finally find someone who understood that despite relatively normal markers, my back pain was likely inflammatory in nature and finally referred me to a rheumatologist. I still don't have a definitive answer to what exactly I have - I'm sort of in "Overlap Syndrome" land, but at least I have a team of doctors now who look beyond the tests and have supported me on this journey. After 2 bad experiences with local rheumatologists, I decided to try Manhattan and was researching rheumatologists there when I came across the doctor I use today. This was on her page:

"Dr. Yuan specializes in treating patients in an undifferentiated state, who have trouble identifying their illness due to the spectrum nature of autoimmune diseases. Autoimmune diseases are often an unfortunate combination of "vulnerable genes" and environmental triggers which lead to chronic inflammation. Because of the intermittent and vague nature of chronic inflammatory symptoms, patients often start to wonder if their symptoms are just "in their head" after years of not finding an answer. Even as an internal medicine resident, Dr. Yuan realized that making the right diagnosis alone can often be a great relief for patients who suffered from long-term debilitating symptoms. Since then, her passion for rheumatology has grown as she sees how chronic autoimmune inflammation can deeply impact or even take over a person's life. Dr. Yuan’s priority during the clinical evaluation is to have an open mind, listen and encourage patients to share additional clues to assist diagnosis and treatment."

Her "about me" page made me break-down and cry as I felt like she was talking directly to me. I did feel like maybe I was crazy and maybe it was all in my head, but I finally understood it was chronic inflammation that was the cause of my pain and fatigue. 6 years later, I'm still with her and we're still trying to find the right drug for me, but she has encouraged me not to give up. I hope you're able to find someone just like her who listens and is willing to treat you as a whole person and not just as a set of labs. Hang in there and definitely don't give up. Wishing you the very best. 🙂

I tried Rituxin in 2023. I don’t have lupus but was trying it for inflammatory arthritis of the spine/hips. While it didn’t control my symptoms, I did want to say I didn’t have a reaction to the infusion and had no ill side effects either. Hopefully it’s smooth sailing and works for you!