Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I am. Maybe your tests have been borderline. Maybe doctor after doctor told you it isn't RA because your inflammatory markers are low, your vectra score was in "remission" numbers. Well, I saw my awesome rheumatologist yesterday, and I told her I sometimes feel like a fraud. My rheumatoid factors are negative, my crp and anti ccp negative, my ana and my sed rate negative, and my vectra (while on Arava, Enbrel, and Plaquenil) was a 19. I felt like a fraud.
She said this.
The tests we are using to diagnose rheumatoid arthritis are early 20th century tests. The vectra is new and looks at some markers, but the sed rate, crp etc is an early 1900s test. Just because you test negative for THESE markers, doesn't mean you don't have rheumatoid arthritis. It just means that we don't have the medical knowledge yet to test all the OTHER markers that are associated with rheumatoid arthritis. There are other markers that are positive on seronegative patients. We just don't know what they are yet, and science is far behind in this diseade.
This is my definition of an excellent rheumatologist. She understands seronegativity, understands her field, and is compassionate and super intelligent. She is probably one of the best physicians I've ever met.
That said, since I've been off all medications 3 months and have avoided prednisone, I asked for the vectra again to compare to my score of 19. Watch it be 12 now lol! She is running a full blood workup as well. I got a steroid injection into my horrible left shoulder. She said it's rotator cuff tendonitis, and she said I had a lot of calcification in it after injecting it. Haven't googled what that means yet.
Anyway, a small update on me and hopefully comforting words to negative patients out there. Never settle for bad service from a doctor. There's others out there like the gem I found.
She said this.
The tests we are using to diagnose rheumatoid arthritis are early 20th century tests. The vectra is new and looks at some markers, but the sed rate, crp etc is an early 1900s test. Just because you test negative for THESE markers, doesn't mean you don't have rheumatoid arthritis. It just means that we don't have the medical knowledge yet to test all the OTHER markers that are associated with rheumatoid arthritis. There are other markers that are positive on seronegative patients. We just don't know what they are yet, and science is far behind in this diseade.
This is my definition of an excellent rheumatologist. She understands seronegativity, understands her field, and is compassionate and super intelligent. She is probably one of the best physicians I've ever met.
That said, since I've been off all medications 3 months and have avoided prednisone, I asked for the vectra again to compare to my score of 19. Watch it be 12 now lol! She is running a full blood workup as well. I got a steroid injection into my horrible left shoulder. She said it's rotator cuff tendonitis, and she said I had a lot of calcification in it after injecting it. Haven't googled what that means yet.
Anyway, a small update on me and hopefully comforting words to negative patients out there. Never settle for bad service from a doctor. There's others out there like the gem I found.
I was finally diagnosed after years of heart breaking attempts with just a low positive anti-CCP and a borderline significant (is that like being a little bit pregnant?) ANA titer.
Let us know how your Vectra turns out...I don't want to wish it to be bad but I know exactly how you feel!
She is THE BEST physician, I feel, I have ever known.
The injured left dominant wrist with the RA MRI dead giveaways helped, I feel, in my quick diagnosis...but it would seem this doctor is beyond the "standard care" most posters are experiencing here in the states.
Thanks for sharing! This makes me feel less like a "fraud" for being seronegative as well!