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Does Anyone Have Seronegative RA? Were Your Doctors Able To Get Your RA Under Control?

A myRAteam Member asked a question 💭
Chesapeake Beach, MD
January 19, 2020
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Answer Summary

Members with seronegative RA shared that getting diagnosed often required persistence, with several describing how diagnosis came through... Read more

Members with seronegative RA shared that getting diagnosed often required persistence, with several describing how diagnosis came through synovial fluid pathology after joint surgeries, family history, or years of symptoms before doctors would confirm the condition. Many members described cycling through multiple medications before finding what works, with some achieving remission on drugs like Enbrel or Methotrexate, while others continued to struggle with flares and medication failures despite years of treatment. A recurring theme was the frustration of doctors dismissing ongoing symptoms as fibromyalgia or other conditions, the emotional toll of adjusting to life with RA at any age, and the importance of self-advocacy when navigating a diagnosis that does not always show up clearly in bloodwork.

A myRAteam Member

My doctor just said “ you have arthritis in your neck and both hands

January 19, 2020
A myRAteam Member

I have had RA since I was 9. So technically I have JRA but I have been seronegative this whole time. For years I have been able to go for long bouts of remission on monotherapy first with methotrexate then with enbrel. In all honesty I think rather your negative or positive really doesn’t matter but that’s just my opinion to me I think it’s all just the same

January 19, 2020
A myRAteam Member

My primary did all the bloodwork and it was all normal.my sports med.dr.did xrays for osteoarthritis and there was no damage,so he sent me to a rheumatologist. I have hard lumps in both of my hand knuckles.i was diagnosed with fibro.over 5yrs ago because of the tightness in my shoulder blades,back and neck.i also have alot of stiffness if I relax to long and when I wake up in the morning.it all started with severe vomitting migraines. I've had trigger point injections several times but my muscles got tighter.im on lyrica,tramadol,and muscle relaxer.i am also a cancer survivor of 28yrs.lost my life a couple times and because they took my spleen my platelets are higher than normal,so whenever I hurt my ankles or legs,I get blood clots.have to go on blood thinners when that happens and before any surgeries.my rheumatologist appointment is this tues.and I hope she dies more investigating because my dad died of a autoimmune but they didn't find it until he got kidney disease.

January 31, 2020
A myRAteam Member

I have Seronegative RA also. My hands are badly affected, as well as several other joints. I had my left knee replaced last July. It was a good decision, and i am happy with my new knee. I have a really bad back from a compression fracture i suffered after falling down a flight of stairs, in 1987. I had the disc removed at the S1/L5 level years later, and did really well for 10 years. I now have severe spinal stenosis, and have lost the feeling in my left leg. I use crutches to ealk because the nerve damage to the leg causes it to give way frequently and i fall. I manage the back pain with several meds and Radiofrquency denervation a couple of times a year. At this point the only permanent fix is a spinal fusion which they will not do because i smoke. I dont know that i would want to have it done, as i have heard many horror stories! Recently i have been having aweful flares, and i am constantly fatiqued. I see my Doc next month, which cant come soon enough! Sorry for the long post!

January 26, 2020
A myRAteam Member

I have been diagnosed with RA for about 7 years. I am seronegative. I have been on multiple meds, remecade being the first one, and I could see results! But then it quit working😞. Since then, I have been on 6 different meds. My rheumatologist told me last visit that "maybe it's my fibromyalgia acting up and not my RA". Needless to say, I can tell the difference but I'm feeling lost.

January 21, 2020

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