I'm brand new to the forum, newly diagnosed. I tried a post under a different category no responses yet...so let me try here. I'm looking for member's info about the CCP test. Mine is fairly high-181. There isn't much on the internet about what this actually means other than it confirms RA diagnosis. I can't find specifics on the number itself. Thanks!
I think the range varies from lab to lab, that's why you can't find anything concrete about the numbers. All I really know about it is what you said, it's a more definitve test for RA than the RF.
Anyway, welcome to the board. Sorry about your diagnosis though.
Hi and welcome to AI!
Your CCP is one of the highest I've seen. Did your rheumy rule out infecion driven?
Habr -
There's a girl on the IPRS with a sky high CCP and then people like me - CCP 0 with an RF of 706. Go figure. Just don't let him tell you you're not PRA because of the CCP test. Like everything else about this disease - we're all over the board.
Pip
Edited to ask - what was your RF?
Pip!2008-03-01 12:35:52Truthfully we did not discuss infection, but all of my white blood cell counts appear to be normalOh-sorry RF 173My RF was at 21 when they tested it the first time and then this past time it was under 20
Is PRA palendromic RA? And doesn't that just mean the pain is jumping around? I believe PRA is palindromic rheumatoid arthritis. Here's a website that has a ton of info on it. http://www.palindromicrheumatism.org/index.shtml I think it means quite a bit more than just pain that's jumping around.
I went to the sight-still confused what's the difference?
I read in one of the forums that RA is RA.
Pip should be able to help you on this one.
I know one of the main this is there is usually no joint destruction with PRA. Then again, I think that some people believe that PRA and RA are one in the same. I don't.
Then my question would be could a PRA person get a positive CCP since that is specific to RA?
The articles I've read said that Anti-CCP can be positive in both PR and RA.
This is on the American College of Rheumatology site:
In a study of patients with RA or palindromic rheumatism, anti-CCP (CCP1) were found in 55% of both conditions, indicating that palindromic rheumatism is closely related to and often progresses to RA (5).
So what is done to differentiate diagnosis?I have no idea. I've read that test results for PR are usually unremarkable. I felt like I was PR when mine started because it was migratory. I wondered if my RD said RA because I had so many positive results, such as ANA 1:1280. I think another difference is that there is no damage in PR like there is with RA.But damage might take years to show up...
You might want to send a private message to Pip for some specific information about PR. I'm not very knowledgeable in that area. It's all very confusing to me. None of it makes any sense to me.
I came across a site about a month ago that was one of those question-and-answer with a doctor sites. Someone asked him about PR and how it should be treated. He said he called it RA and treated it as such. At another similar site, the doctor said that in his practice, PR almost always turns to RA.
I'm going to ask my RD about it at my next appointment (if I remember), but that isn't until April.
This is an article I thought would be interesting to read.
oh and this one is a little scary
forgot link,...duh lol
edited to add link
HopefullyNot2008-03-01 15:29:56Hello hello!!! I'm so late on saying welcome (as usual!)
Def. send Pip a PM - she's super super busy this week so she might miss this thread. But she'd be more than happy to help you learn about PRA - she knows a lot about it she's good at educating herself. :)
Hope you find lots of good info here!!!
Maybe this will help a little:
Rheumatoid
Factor. In RA, antibodies that collect in the synovium of the joint are known
as rheumatoid factor. In about 80% of cases of RA, blood tests reveal
rheumatoid factor. It can also show up in blood tests of people with other
diseases. However, when it appears in patients with arthritic pain on both
sides of the body, it is a strong indicator of type 2 RA. The presence of
rheumatoid factor plus evidence of bone damage on x-rays also suggests a
significant chance for progressive joint damage.
Erythrocyte Sedimentation Rate Test. An erythrocyte
sedimentation rate (ESR or sed rate) measures how fast red blood cells
(erythrocytes) fall to the bottom of a fine glass tube that is filled with the
patient's blood. The higher the sed rate the greater the inflammation. In
addition to rheumatoid arthritis, the sed rate can be high in many conditions
ranging from infection to inflammation to tumors. The test is used, then, not
for diagnosis, but to help determine how serious the condition is.
C-Reactive Protein. High levels of C-reactive protein
(CRP) are also indicators of active inflammation.
Anti-CCP Antibody Test. The presence of antibodies to
cyclic citrullinated peptides (CCP) can identify RA years before symptoms
develop. In combination with the test for rheumatoid factor, the CCP antibody
test is the best predictor of which patients will go on to develop severe RA.
Used in Europe, it is now beginning to be used somewhat more commonly in the
US. US laboratories have not yet developed consistent standards for
interpreting the test, however.
TheLa -
Again, I'm the odd man out - CCP's and RF measure antigens and antibodies - to what???
Here is a post I made a bit ago about PRA - as you can see - the CCP and RF, like with RA, don't necessarily tell you what's going on with your particular 'brand' of PRA/RA. The search feature made the word Palindromic in yellow and I don't know how to 'undo' that. :-)
-----
Palindromic is a rare form of arthritis. Some researchers say we're not RA; others say a subset. Supposedly the Korean researchers say we have different genes that activate. It's known for it's migratory pattern and, usually, hits the large joints first. For me, it was my shoulder, then my knee, then my toe (they thought gout) then my wrists...then everything kind of went off at once. The time off between 'attacks' shortens. At first it was every 6 months. Then monthly. Then weekly. Then all the time.
The pain level is horrendous. I mean BAD. One nice rheumy I saw suggested ice packs (he's the one my hubby wanted to hit). The pain level is stupifying. At one ER visit, 2 shots of morphine didn't knock it out. That's the level I'm talking about.
Originally they said RA because of the RF but my CCP was negative. There is another PRA peep with a sky high CCP and a 0 RF. So...we can't be found on the usual tests. There is some neurological involvement...but I think that's from the inflammation.
We don't usually swell or get redness until we progress. So, we see docs who say...'it's all in your head'.
According to the researchers - something like 50% of us 'resolve' or go into drug free remission. There is something in our bodies that fights like hell to beat this disease. This, as far as I can tell, is the ONLY autoimmune disease to do this. The others have a 'spontaneous remission rate' of under 1%. Most people wouldn't even realize they were Palindromic. They'd get some weird hugely painful episode that the ER would chalk up to 'bursitis' or some such nonsense.
Then we get nothing. I mean NOTHING. The 'attacks' usually last a few days and completely disappear. So, when it happens again you make an appointment and....nothing. You're maybe sore; but that's it. We can spend years and years with 'it's all in your head'. You'll see posts here about how family and friends don't understand RA - try PRA. Seriously, in the beginning we're normal between attacks so they don't understand you get afraid to do anything for fear of bringing on an attack. The Gym? Anytime I went anywhere near the place I was down for a week.
Of the people that do not spontaneously remit - 50% go on to be Palindromic for life. This is usually less and less 'time off' and more and more horrendous pain.
We also do not necessarily get joint damage. There is research suggesting the pain level is some sort of protection.
Of the 50% that went on to be Palindromic for life...50% of them went on to be regular RA, including joint damage. There are some docs that say the pain will lessen over time. Not from posts I've read. I, personally, think we may get another disease, in this case RA. Like AI people can get RA, then Lupus. But that's my thoughts.
I think I went straight to RA, do not pass Go, do not collect 0, because at the time this was all going down I was poisoning myself by self-medicating with Aleve. I have one toe that started 'mutating' but it's slowing going back on AP.
My AP doc thinks Palindromic is almost always a sign of infection and AP will work for us.
I think if we reprogram the body, or 'reverse' this disease enough, we can get the body to do it's thing again. I think we can all (RA etc.) do that, but it's going to be easier for me since my original is PRA.
Does this make sense?
Pip
Pip-
My question is then why would a doc go with PRA? Everything hit me suddenly in October. Feet were/are symmetrical - hand, wrist, and shoulder prefer right side, but did go to left occasionally. My RF (173) and CCP (181) say RA, but does it really matter? The meds will probably be the same as you want to prevent damage (assuming RA) especially if those two tests point to RA.
I might get unrefutable confirmation this week anyway. My left wrist xray showed possible mild degeneration-they looked like spots, so I'm getting an MRI monday. What else could those spots be anyway? I guess I should have asked the rheumy. I always get a little befuddled in his office anyway. I blame the MTX! La
TheLa2008-03-02 08:05:17Because of how we 'present'. The asymetrical nature and the big joints first - and how we don't usually get damage unless the disease is progressing. I was distinct big joints with 6 months between attacks prior to booging into RA. I don't think it means much unless depending on your treatment of choice. I chose AP in order try and get back to PRA because I think that has more hope for a permanent remission.
Pip
Copyright ArthritisInsight.com