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ginai54
01-17-2010, 11:12 AM
Does anyone know how meaningful following the numbers for these are? For instance, can you discern the severity of RA from these, and if they go up or down, what that might indicate about possible progression? The first blood work I had the RF was 65, most recent ly 43- wondering if it's likely that this difference is just different labs , or means something? And, what is a typical number for the citrulline antibody, of someone with RA? The labwork cites anything over 60 as being strong positive, but how high do these numbers go ? If there are good links abut these things, can someone forward them to me, please?
I think I have a good rheumatologist, but am considering getting a second opinion, just to cover the bases.
Thanks
ginai54

kageyd
01-17-2010, 03:13 PM
ginai, try this URL.

http://arthritis.about.com/od/arthqa/f/arthbloodtests.htm

It is part of the About.com/Rheumatoid Arthritis series, and you probably already know it. It doesn't give you specific numbers, but does explain something about each of the things tested for. It's an excellent overall site.

You probably know by now that at least 20% of rheumatoid patients have a normal RA factor value, and that as we get older the presence of the RA factor increases, whether we have RA or not. You should have been given the printout of your lab tests, and for each value there is a "normal range" given, so you can see just how far above the high normal you are for RA factor, for CCF, and for sedimentation rate, the three main things they look at first.

As a pretty new RA person, I've been trying to figure out how the rheumatologists determine whether medications are helping or not, other than by patient reports. Unfortunately, for those of us who like numbers, patient reports do seem to be a major part of "improvement" determinations, i.e., is the pain better? I've got an appointment with my Rheumy this week, and one of my main topics will be how she knows whether or not the sulfasalazine that I am taking is helping. If I learn anything, I'll post it.

kageyd
01-17-2010, 03:48 PM
http://www.labtestsonline.org/understanding/analytes/rheumatoid/test.html

Here's another URL, just about lab tests and the rheumatoid factor, I think you'll find it frustrating because it says, as so many of the other sites say, that the RA factor alone, up - down - or varying -- is definitely not definitive, that it has to be considered in context of all the individual variables. This is an emotionally draining illness, as well as a physically frustrating one, because there is so little that is "definite." Sorry.

ginai54
01-18-2010, 07:42 AM
Thanks Kageyd, I have seen the ranges for normal/abnormal, but what isn't clear from my reading is what does it mean for severity/ potential for progression, if your numbers are slightly vs. way above norm, and what is typical for mild/moderate/ severe disease, and whether numbers reflect this, or just pain level. My rheumatologist never explained any of this to me, and altho I like her and she is highly recommended, I'm going to see about finding one that is more communicative.
Thanks again
ginai54

kageyd
01-18-2010, 08:56 AM
Let me know what you learn, ginai. All that I've read leaves me pessimistic about getting much about "progress" or "regression" that's definitive, not because the docs are uninformed, but because they - and the research - are as uncertain as the patients (they just don't say so). There are a lot of good studies going on in the Netherlands right now that should shed more light on treatment. Kageyd

kageyd
01-22-2010, 10:42 AM
Well, I did have a talk with my rheumatologist this week about how she will know whether or not my meds are helping. Tne answers, which she gives freely and openly, are as I expected: 1. patient reports about pain - better, worse, or same; 2. swelling at joints, especially around fingers (that's where my initial diagnosis started, swollen finger joints); and 3. joint stiffness. I asked about x-rays, and she said no more than once every 6 months, because the "pictures" of damage around joints are often not too helpful.

The underlying answer seems to be, and I thank her for her honesty, RA does not 'get better,' except in pain reduction, reduced swelling, and reduced stiffness. So even with the biologics, the intent of medications is to stop the progress of RA, not really to repair existing damage. To the best of my knowledge and my reading, I don't see anyone claiming to have rebuilt the synovial tissue in the joints which is what is damaged in the first place. If anyone has seen a scientific report on the actual repair of synovial tissue, let us know!

Paula
02-03-2010, 04:07 PM
ginai54 - are you asking about the RF test or the anti-CCP test? I do not know the ranges on the RF test (generally the first test for RA, I gather), but I did find something today on ranges for the anti-CCP test:

http://arthritisinsight.com/archives/test9965.htm
The ranges are:
weak positive: 20-39
moderate positive: 40-59
strong positive: >60

I looked it up today because my doctor told me this morning I tested over 250 on the anti-CCP test. From what I have read, a high score on the RF does not in itself indicate RA, but high readings on both tests does. I hope that helps, and if you find out anything, please post it! I am starting Enbrel next week - are you on medications yet? Good luck :)

star73
02-05-2010, 05:37 AM
My RF and CCP are both negative but I was still diagnosed with RA.... some of us just don't make the antibodies that show up in lab tests.

kageyd
02-05-2010, 06:44 AM
Me too, Star73. The knuckle twisting (and pain there) and the x-rays were the defining pieces that convinced us (me and the Rheumy) that it was RA. Kageyd

ginai54
02-08-2010, 02:47 PM
Paula-
I was referring to the antiCCP. I'm wondering, beyond the "strong positive" 60, how high do those numbers go, and what does a value of 100 versus 200 mean, if anything. My concern is that I've read that having a strong positive RF and antiCCP may indicate a more severe form of RA, and having both of the above, I'm worrying about what that will mean for me. I don't have most of the typical clinical signs, although I do have chronic tendinosis ina number of joints(knees, elbow, shoulder) SO- I hurt, but seemingly not in the typical places. Anyway, just worrying out loud...

kageyd
02-08-2010, 04:35 PM
ginai54, I too find the numbers difficult to interpret. Here's my take on it: The antiCCP seems to be a kind of measure of inflammation going on, and while perhaps not unique to RA is strongly indicative of RA. I haven't found anything that tries to assign "categories" to different levels of number, but I've picked up that when the number is definitely well above the high normal number, that person very definitely has RA and the higher the number the more likely the disease is to be serious. Pretty much the same for RA, but I'm not sure yet just what the "RA Factor" is doing in the body - I've probably read it, but it doesn't stick for some reason. Again, the higher the RA factor the more likely the progress of the disease will be problematic, and the RA factor seems to go up when the disease worsens.

Yet we always have to remember that always, always, some individuals will not fit the pattern. Still, I have not read of any one who has had a very high RA factor and/or a very high CCP factor who is having just a mild course of RA. On the flip side, though, some people who have consistently difficult RA may have relatively low CCP and RAfactor. Hard to understand, evidence of still how little RA is understood.

It also seems from what I have read that those who initially have a normal RA factor may see that number go up as their disease progresses, so to some extent an increase in the RA factor is a bad sign.

I really wish that here, or elsewhere but I can't find a useful elsewhere, people were regularly posting (as you and some others do) what they know about their numbers as related to their severity of RA. I'm no help at all, because I'm new and both my RA and CCP were within normal range - yet I am definitely diagnosed based on X-rays and type of knuckle swelling and contortion I've shown. And, as I've said, the fact that i've had long-standing osteo means that we can't interpret much from pain about how much of that is RA and how much is OA. Wish I could contribute more!

Yours for clarification - one of these days. Kageyd

ginai54
02-10-2010, 04:44 PM
The first indication of this disease for me was an RF of 60, but the last bloodwork the RF had gone down to 40, and the antiCCP was 120. I have been angsting over this since I read that those 2 factors mean a more serious course. However, today I saw my doctor and she said that the clinical signs are not there, swollen joints etc, and that despite the numbers, she feels I have a very mild case, and that she forsees, in a year, reducing the plaquenil to once a day. I had taken a bone density test and that came back, according to her, better than most women my age, without RA, so that's reassuring. I still have chronic tendinosis and am very tired, but I was somewhat heartened by her answers. I also have made an appointment for a second opinion from another hospital in March, so we'll see what happens. I am very interested in knowing about other people's numbers and clinical symptoms also- I think it's helpful for getting a context. I am trying not to catastophize, (my tendency), as after reading one of the RA warrior blogs last night, I could not sleep... at all. Which is not helpful.
I appreciate being able to spew like this, though...

star73
02-11-2010, 05:33 AM
ginai...even people who do not show the antibodies in their blood can have severe RA. My RF factor and CCP have always been negative but my inflammation markers are elevated and I have joint pain and swelling. I have to have MRIs every year along with x-rays to check for damage. My RA isn't severe as I do not have damage yet but it hurts all the same. The blood markers are good in helping diagnose RA but it doesn't mean you will have anymore damage than anyone else. Some things I have read say different but then again they will say that you can have severe RA with being seronegative. I've had two rheumys tell me the same. The Anti-CCP is a strong indicator in diagnosing RA. Has your doc diagnosed you?

kageyd
02-11-2010, 08:02 AM
Spew away, friend, we all need to do it.

Your situation seems to me rather unusual from all I've read and talked with doctors about -- antibody markers but no RA localized symptoms. Seems as though everyone agrees that consistently positive RF, and especially an above normal CCP, are definitive for RA. Sounds like the March 2nd opinion may help.

Did you get targetted x-rays (targetted to the typical RA joints)? The pattern of x-rays both in my fingers and in my one hip (the other one has been artificial for eight years, from OA) was typical of RA. I too have excellent bone density (hey, I'm 69, that's good news...) and because my RF and CPP are within normal, I'm still a little skeptical that I even have RA --- but the x-rays, and twisted knuckles, make me believe I do have RA. But I don't have the tendonitis or the fatigue that you're describing. A puzzle! Like so much of this d..... disease.

Hang in there, we're listening. Kageyd