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CCP Levels
marylandmomof2boys posted:
I am 42 and was diagnosed with RA 2 years ago. I take sulfasalzine and hydrochloriquine with prednisone for flareups. I feel that my RA is managed well. I rarely have any symptoms. My CCP (cyclic citrulline peptide) levels are usually around >50-60. My most recent lab results indicated levels >250 (levels were only >50 3-months ago). Should I be concerned by the huge increase in my CCP levels? What does this increase mean? Does it mean a flare-up is around the corner? Does anyone else have similar levels? Any help is greatly appreciated.
Byroney_WebMD_Staff responded:
Hello marylandmomof2boys!

I have some articles that may help answer your questions. The first is about the Rheumatoid Factor Test, and the second is Blood Tests to Diagnose Arthritis.

Also, check out this interview, "Expert Answers to Questions about Rheumatoid Arthritis." Finally, communicating with your doctor about the change in levels, since he/she is the one you say has been managing your RA well.

Best wishes,

marylandmomof2boys responded:
Thank you so much for your information. This information that you referred to me is information that I was already aware of. What I am interested in is if anyone else has had similar jumps in their CCP level or similar levels, should I be concerned about these levels (meaning is this indicative that my RA is more advanced or will be more advanced, etc.), is this a sign of an upcoming flare-up (I think I know that answer, I had a flare-up yesterday despite no symptoms prior to that). I have called my doctor and he put me on steroids but I only spoke to his assistant that didn't have answers for me. I was told I need to schedule an appointment, which I intend to do soon.
RAWarrior responded:
Yes , Maryland, there is a spikey blood test. I too have had those Anti-CCP levels, even while i was on very high meds (double dose of Humira and 25 mcg injectable methotrexate). I was shocked, thinking that the meds would be bringing it down, not letting it soar. My symptoms were very bad no matter what the ccp test showed. Have not had dr. react. They pretty much scoff. I sometimes wonder where they got their degrees... sorry, just discouraged with these guys refusing to admit they don't have all the answers. My Answer: the test level proves the disease is very active; where you will feel it and how is individual because of other factors which are not yet understood. Will tell you if I learn more, Kelly
gout101 responded:
CCP levels can vary and are not truly reflective of disease activity. High levels at diagnosis may indicate more aggressive disease but that is more proven with the rheumatoid factor. CCP is a blood test used to help confirm RA, not diagnose it or follow disease activity. If checked and postitive it doesn't need to be checked again. Hope that helps
RAWarrior responded:
I don't agree with Gout. The reason the anti-CCP test is not on the diagnosis check-list is that the list is older than the test. The CCP test is still newer and is not even reckognozed by some old--school dr.s.

I have read many journal articles which show that the anti-CCP test is much more accurate (about 90%) than the RF ever was (only about 75-80%) at confirming RA or predicting disease severity. Also, if you read about specifically what it is, there are several other anti-bodies in there during the RA process. RF just happened to be the first one that was identified and named, so it ended up on the list back in the 1980's when they made the list.

I do not think that Maryland ought to panic, but needs to take the result seriously as an indicator that she will probably be a candidate for the more aggressive treatment which is more commonly recommended these days.

gout101 responded:
I guess I wasn't clear. CCP is a great test and better than a rheumatoid factor. What I was saying is that varying levels of CCP during treatment dose not reflect how well the disease is controlled. Also you can't diagnose RA with a CCP test (or any other test for that matter). As Kelly pointed out the test is accurate. It is 90-95 % specific which means 5-10% of people that test positive will not have RA all tests have some degree of error thats is why a history and exam is needed.
newyorkbklyn replied to gout101's response:
Hi - About 3/4 months ago I started to have some slight inflammation in a couple of fingers, aches in my shoulder tendons, a sore knee one day, a sore jaw the next, etc. They aches almost always disappeared within a couple of days. The only "chronic", yet intermittent pain I feel is in my shoulders - and usually not both at the same time. It's well managed with a bit of Aleve. I feared I had RA, as I was also tired, and fighting low-grade fevers, often etc. I received a high RA factor (93), went to a well-regarded rheumatologist in NY who said that my symptoms weren't indicative of RA at all - never symmetrically occurring, always going away after a a few days - lots of days (most, actually) without stiffness in the morning, etc. They did a lot of tests - I'm negative for Lyme, Lupus, Hepatitis, Mono, etc., etc. My hunch is that it's viral arthritis, as my husband, two young children and myself nursed a LOT of viruses this past winter - more than usual - and all this started for me in Feb, 2012 and March (not incidentally when allergens were at records high, as well.) In any case, I went to another rheumatologist for a second opinion who agreed that my symptoms weren't pronounced enough to be considered RA, and didn't "behave" like RA - she agreed that it could be viral in nature, which just seems to fit the recent medical history in our household. However, she seemed to feel that a positive or high anti CCP blood test would confirm if this was RA or not, and I did get a high anti CCP test. We had x-rays done, just to rule out any damage, and the x-rays look great. One rheumatologist (the one who's been practicing for 37 years and is considered "one of the best doctors in NY"), doesn't feel that this result is a positive indicator that I have RA or will even GET RA. He does agree that it is an indicator of my potential for joint damage SHOULD I get RA, but he doesn't believe at all that it means I will GET RA. The other rheumatologist, however, seems more convinced that it means that I will. Any thoughts? Thank you!
5charlong replied to newyorkbklyn's response:
Yes, I have a thought. You definitely need a second opinion. When my RA presented, I also had non-symmetric joint aches and pains. I had a CCP level of 56, and the RA factor hadn't been checked yet. Based on that moderately strong positive for RA, I was referred to an RA doc and was treated as if I did have the condition, as all symptoms lined up for it. When I did have the RA factor test, I tested out positive, but not a strong positive. Over the last 3 years, interesting and pertinent to this current discussion, the CCP levels increased from 56 up to >250, and the RA factor is creeping up over time as well. I don't really think that the 'strength' of the indicator levels in my blood have anything to do with the relative 'strength' of the RA in my system, since I feel less "RA-y" now with the CCP factor of >250, than I did when I had CCP of 56.

DEFINITELY get a second opinion. Oh--also--my mom started with Lupus, and it eventually morphed into RA. She no longer has indicators for Lupus, only RA...something to consider.

Best wishes on your search, HTH

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