Hi, I would like to understand the seronegative RA diagnosis a little better. My Rheumatologist did not explain much. I have hurt for a long time. December 2020 my ANA was negative, April of this year starting getting really sick. My SI joints swollen, hands swelling. ANA positive and ANA titer positive but tests underneath were fine. He said last week I have Seronegative RA and you cant find much about it.
“Seronegative RA” like RA in general can be a basket of different disease pathways. Many research studies are often conducted only on RA positive people because some initially diagnosed with seronegative are eventually reclassified into another autoimmune disease or convert to seropositive. I get frustrated too with the absence of biomarkers with seronegative—I do better if I think of it as autoimmune synovitis. Treatments, often by trial and error, are not necessarily different. Precision medicine has not yet arrived.
Sounds just like me. I can’t help explain it but have the same diagnosis. Just saying you aren’t alone.
I have travelled a long and bumpy road with seronegative RA. Mostly because the rheumatologists keep leaving my area. I travel almost 2 hours to see my current one. And of course, I saw one who took me off all meds because my tests were not positive. I have doubted the diagnosis several times, but then I have to accept it when the medications work. Currently on Orencia and Methotrexate injections. Today is a bad day, but hope for tomorrow.
The good news is, supposedly, even though we may suffer badly at times, it is not as bad or crippling as positive RA.
I am also seronegative. Based on physical exam, especially fingers and wrists and past history, my rheumatologist is treating my RA no differently than seropositive. Hope this helps.
I understand your frustration. I’m seronegative also. I remember the many years I tried to tell doctors my symptoms and was dismissed as looking for trouble. I finally went to a new PCP who was female and actually listened to me. She did the usual bloodwork and nothing showed up. She was like me, persistent, and sent me to a rheumatologist! He did physical exam of my joints, took X-rays, bloodwork and verbally interviewed me. How refreshing! I was diagnosed seronegative and made journey began. I tried methotrexate. Ended up with mouth sores, had biopsies, benign, had to stop taking. Over the years I’ve tried many meds. I was able to take Enbrel injections for several years. Eventually they weren’t effective and we’ve tried 2 oral meds and 1 injection. I’m not able to tolerate without infections. So currently I’m taking prednisone and hydrocodone. Hopefully something will help me in the future. Keep hoping 🙂
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