OK, I'm still unclear as to how high a number has to be to confirm RA (as much as is possible). After reading another thread I've learned that this test is the most helpful to determine RA activity. My Anti-CCP came back marked high but it was 5.00 when it was supposed to be below 4.90. That sounds like it's not very high at all, unless each point is more important than I thought. What is considered a truly high CCP number? Apparently my RD thinks it's not high enough to confirm RA but believes there is a connective tissue disease issue because of other blood work that came back positive.
Can those of you with experience clear this up for me? Thank you.
Are you sure that was an Anti-CCP test and not a CRP test?
The ranges you list are the same as my CRP test. My Anti-CCP normal test ranges say it has to be < 20.
My CRP when diagnosed was 13 and my Anti-CCP was 238. I'm not sure if thqat helps you any.
Hi Kweenb,
The test clearly says Anti-CCP. I assume the CRP you're referring to is C-Reative Protein and that was low. It's supposed to be between 0.0-1.0 and I was below 0.3 (I think that's what the little sideways, left facing arrow means, right? I'm such a novice at this.) I understand different labs have different normal ranges and that it's important to use the same lab every time to keep it consistent. I think your lab uses a very different system so I can't make sense of the numbers. Thanks for your response.
My RD says if your anti-CCP is around 90 or higher then it is pretty much RA.
PJ
My CCP was 150 at its highest. What are the units of measurement used by you lab?What are the units of measurement? Not a clue, unless the U/ML under "UNITS" is what you mean, but I don't understand what that indicates. Any idea? Thanks for trying to educate me.
Oh wait, I also see AU/ML under 'Units" for the high ANCA Myleoperoxidase (170). Do you know what that means also?
Wow!
OK, my RF was 706 but my CCP was 0 when I started AP. It then kind of jumped up (common on AP) so my next test was RF 395 but CCP 2.9. Now, supposedly, everything is 'normal' except the RF which is still at 286.
So...what does this mean?
Pip
my anti-ccp was 63 last summer, but I've been in remission since last September.Was the anti-ccp test ordered once you saw a rheum dr?
My GP did the basic ESR, RF and CRP-C reactive protein, but all were normal. I've heard, though, that even those three together are not as sensitive as the anti-ccp test. Is that true?
Thanks,
Christina
Congrats Emma on the remission - it was you, right? Can't see the first page. LOL
I don't know Jesse. I was under the impression that once the CCP went positive you almost always had RA. Like less than 1% do not.
But my AP doc said something like, 'well, now you're positive' which I kind of took to mean I was now 'hosed'. So, if I'm now zero - does that mean I'm 'unhosed'.
I like your less than 4.9 because then I'd be a 'little bit RA' and could keep thinking I'm back to pure PRA.
Pip
I was told the anti ccp is a newer test that is more definitive for RA.
My anti-ccp was >250. Rheumatiod factor 658, So my rheumy said there is no doubt in her mind that I have RA. Also my C-reactive protein and Sed. rate remain high, even though the numbers go up, come down a little, go back up, etc......
Usually the clinical examination is part of the whole diagnosis, too. What the doctor actually sees in your hands, feet, and checking how your joints move. Also x-rays and any other tests your doctor feels are needed.
My clinical exams are confusing but my doc has no doubt of the diagnosis, bacuse all the tests they do for RA remain consistent.
I also have severe OA which changes my x-ray results and causes all of my joints to hurt and sound gravelly when moved.
First the neurologist took blood work while trying to rule out MS and when the Rheum. factor, RA titer, ANA and ANCA came by positive/high, I was referred to a RD who did more definitive blood work. That's when the diagnosis became less certain. I would definitely ask for all the RA blood work available so you can hopefully get a firm diagnosis ASAP. Even if the result isn't what you want to hear, I think for most people there is a certain comfort in finally knowing what's going on so you and the RD can go from there with treatment. After all, your symptoms will continue with or without that diagnosis so naturally it's better to know what you're dealing with.
I believe it's true that the Anti-CCP is the best diagnostic test, but others with more knowledge can tell you if I'm wrong.
Good luck.
Hey Chris -
The first thing any of us need to do IMO is get copies of all our records from when we started to get sick to official diagnosis. I'm STILL collecting them a year later because docs can be a tad bit proprietary about your info.
That's primarily how I was able to gauge how AP was working for me. I know I felt better - but so what? - did the tests show I was moving to remission even with the ups and downs of an 'unstable' disease?
Anyway - the SED rate is also important because it shows inflammtion. Mine was 10.8 (?) and dropped to 5.8 in only 2 1/2 months (I'm really LUCKY here). It's now in the 'normal' range. For me, the only thing left is the darn RF.
So, when you get the results you can look them up at labtestsonline.whatever (I can never remember if it's org or com or info. Sheesh! A Google search will pull it up. Great place, very good reference tool.
Pip
Jesse, Pip, and Nini, thanks for that info!
I am fortunate in that my GP's office automatically sends me lab work results; however, I often find them to be a bit less detailed than what you all seem to receive. For instance, my RF just said "Negative" rather than having a numerical value.
I'm pretty sure that the RD will run all the blood tests again when I see him, as by that point, my tests will be almost 2 months old. I'm definitely going to bring up this anti-CCP if it's not one of the new ones I'll have. And Pip, you are right, I'll make sure I ask for copies if they aren't automatic!
Thanks again!
Thanks pip. I get so confused sometimes. I have three doctors at Kaiser Permanente(my HMO) and none of them seem able to talk with one another. It should not be me that has to research and coordinate what my treatment plan should be, and what medicines I should take, yet that is exactly what happens there. It could be worse. I could have NO insurance.
Chris
Chris, you are so right. I get frustrated with my HMO, too, but thank goodness we have insurance.Christina -
You aren't getting the real deal. You have a right to all your records including X-rays and doctors notes. That's real important for the sero-negative people if only to double check what they're saying when they start offering you anti-depressents. Too many posts here show the unfortunate truth to that statement.
Chris -
The fact that MD's don't check with each other in the same health care system can really work to your advantage. :-)
Pip