Does anyone know the name of the specific test they do to determine that you have RA? When I was diagnosed my RD was positive I had RA because of this specific test. It wasn't RA factor... I just can't remember the name. This test is very sensitive and can detect RA. I was just wondering because it seems that so many people have problems with being diagnosed. If there is a test that is so specific for RA wouldn't that make it easy to rule that you either have it or you don't? I'm confused. Can you tell I'm new to this?
LoriI wasn't aware that there was an actual specific test. I was always told that they test your rheumatoid factor, ANA, and sed rate---and go by your symptons of course. that would be good though--a specific test. Nope, cause you can have it and not test positive.
*raises hand*
I don't test positive for CRAP but I sure do have RA. LOL
Gggrr then why would my RD tell me she was positive I had RA and this test was very specific. I had no symptoms at the time except for a swollen knee...and I was a runner so that was nothing out of the ordinary. No other joints involved. Maybe it was because of the high number? I need to find out next time I see her. If there isn't a specific test how do they narrow it down to RA? I mean, there are so many diseases out there that mimic RA I would think it would be harder to diagnose.
Katie... How did they narrow it down to JRA for you?
Lori
If you test high on those three, you probably have RA. I don't know why, it is what it is??
I have all the symptoms, and get relief from the treatments. So they went with it? I sure didn't get the DX fast though, it took probably over a year. And it was a random ER doctor that decided that's what it was. It wasn't even my regular doc. (I was only 2-ish at the time)
your doctor is likely referring to the rheumatoid factor which is positive in about 75-80% of people with RA. The other test she might be referring to is the anti-ccp which is positive in about 90% of people with RA. You can have RA without either test being positive. Katie tests negative cause she has JRA and these tests are almost always negative in JRA.Thanks buckeye, you're right. Most JRAers don't test positive.
I had a brain fog moment :-D
Maybe it was anti-ccp. I know my RF was 11. I remember that part of it. My PCP did that test at least.
Katie.. Have they tested you for RA now that you are older? Does JRA turn into RA? I know JRA is what kids get...but then is it called that through adulthood too? If it stays JRA what makes it different from RA? Anything?
I wish I could answer those questions!
I still test negative. They thought maybe when I had my flare at 16 that I might show, but I didn't. I didn't show last December either. And I probably didn't show this past time, cause she never called me. She only calls if things change.
That is interesting. I never knew that you could test negative on all tests and still have it. That would make it even more frustrating I would think! No wonder so many people have a hard time being diagnosed.
Do you take anything for your JRA? When did you start meds and if you are on meds do they change the dosage? I thought the tests were how they adjusted dosage amount. Do you have any damage?
Sorry for all the questions. Just find you to be interesting I guess!
Lori
Probably the Anti-CCP test. Here is what I found:
The anti-CCP test has been shown to have a sensitivity of about 74% and a specificity of 95% in diagnosing Rhematoid arthritis. The anti-CCP test appears to be especially beneficial when combined with the Rheumatoid factor (RF) test, which measures another antibody. Traditionally whenever RA is suspected, a rheumatoid factor test is performed. However about 20 percent of people with RA test negative for the rheumatoid factor antibodies and if they aren't tested further, they could remain undiagnosed for months. Performing a follow-up anti-CCP test can help the doctor make a diagnosis early in the disease - a positive test result would strengthen the clinical impression that the patient has RA.
LOL It's okay.
They started me on baby asprin and it seemed to work. That was when we were living in TX and I was about 2-3yrs old.
Then we moved to the UK (daddys airforce) When we got there, they sent us off base to a UK doc. She was FANTASTIC. She said "here, go to a UK pharmacy and fill this, it's not legal in your country for you yet, but it WILL help"
It was friggin liquid Ibu. LOL But she was right! She put me on that, and took me to PT right away. She had them fashion rest splints for my knees and wrists. They were already starting to lose ROM and shape and there was a threat to the growth plates. I wore those every night for probably 2 years. They did straighten my knee, and kept my wrists from going too far to the dark side (haha)
All in all, the only REAL damage (noticible and that does inhibit stuff) is that two of the little bones in my left wrist fused together. So I can't bend it as far, but it's not painful so oh well.
When we got back to the states when I was 5-6 I think I was in remission. But I did still see the RD regularly. I had flares on and off and they typically gave me Ibu. Sometimes Advil, depending on how bad I was.
By age 12 I was taking 1600mg of Ibu 3 times a day. Sheesh! But aside from MTX there wasn't a whole lot else they could give me (legally, at the time) And my x-rays always came back clean.
I think I got lucky because I was really in remission during my growth spurts, so the RA never had a good shot at them. Well, except for my lower jaw. It did mess that up pretty good.
Anyway, between 15-17 I bounced between Vioxx and Celebrex, and ALMOST to that other one they recalled....what was it, Bextra? They didn't seem to help a WHOLE lot, which was weird because at that point my flares were so mild, you would have thought ANYTHING would have worked.
I went off meds and did really well until the end of my stay with mom and dad at age (almost)19. It slooowwlllyyy started to come back. (REALLY slow) And I lost my insurance coverage at 21 with the military, and of COURSE then it really kicked in.
I got coverage last year and saw an RD, and of course I wasn't swollen or anything. BAH! Anyway, she put me on Mobic and I took it for a while but it upset my stomach. Also she put me on flexeril because my neck was TERRIBLE.
I stopped everything and did alright just taking Lexapro for my panic attacks. But everything's come back 100 times stronger, and the Lexapro upset my stomach so I'm off that. On this last RD visit I think we both realized we need to look seriously at what's going on, because its SO up and down.
So I'm currently making a daily log for her, and I got back on April 28th, unless I want to see her sooner she says. I did x-rays and blood work, but I don't think she's gotten the x-rays just yet, so we'll see if she calls me when she gets them.
MAN THAT WAS LONG!! I'M SORRY!!!!
Thanks for sharing Katie. Sounds like you have been pretty lucky with your disease. I sure hope that whatever is going on now stops for you! Have they tested you for anything else? Just curious as I know other stuff can come along with RA. Do you have certain joints that hurt more than others? I am achey but so far nothing serious. The worst part for me is the extreme fatigue!! I'm on MTX and I'm sure that doesnt help any.
It will be interesting to see the results of the x-rays. Is this the first time since you were 12 that you had xrays taken?
Lori
Thanks Rebecca! I think that had to be what it was. I wonder why when my RF factor was normal and my Anti-CCP test was high, I was diagnosed with moderate to severe? I would think there would have to be more factors involved... Hmm...always thinking!
Lori
That's a funny story.
The military really, honestly, swear to god, thinks and fully believes that you are THEIR property. I cannot TOUCH my medical records. I will never see any of it again. Which is truely tragic because I wonder whats in them, and I'd love to skim through.
They gave me a "copy" A poor one at that. And the handful of x-rays I have, are the ones my mom managed to "check out" and never return. And yes, the latest ones I have are from when I was 12. I did have x-rays done at 16 and 19, but I can't get them.
Isn't that just sh*tty??? I'm sorry but it's really a subject that makes me mad.
I do have some joints that are worse than others. My right knee is a nightmare. It can jump off and walk away for all I care. Been like that since I was 12. LoL I get baker's cysts in it all the freakin time. My fingers and wrists are my second worst area.
My NEWEST spot is my elbows. I guess I am lucky, because in 24 years, I've never had any "new" spots. So that's a plus. Just the elbows so far. LoL I was tested for Lupus and Lymes, according to my mother.
The fatigue, omg YES. It's HORRID!! My mom tells stories about how I used to just wander away....and they'd find me somewhere, fast asleep. LoL I took naps until I was almost 7. I just couldn't help myself!
Katie
you can get your medical records from the military. Its just a bit more complicated than getting them from a civilian facility.I got mine several years ago.
Really? Is it a copy, or your ACTUAL records?
Hi Lori, Glad to have you here. Don't ever be afraid to ask questions or think they are too silly. We were all at the place you are in right now at one time. The best way to learn is to ask and some of the best people to ask are those who have what you have been diagnosed with so ask away. I have tested negative on all the tests and am known as sero negative RA. My sed rate is the only is the only test that is high. I am diagnosed mostly by my symptoms and my reaction to the meds.
reader
its a copy..no different than what you get from any other medical facilityThat's what I have and what I had already requested.
My records are 2 volumes, they stand about 5 inches thick together.
You can only read about 20% of them.
That's what I was upset about.
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