Information & encouragement to fight RA
Am i understanding this correctly to mean that high anti-CCP levels point to pain even in the absence of clinical symptoms of inflammation and swelling? But most doctors use anti-CCP as a measure of disease activity. So what is new about this? And what about “remaining pain” when blood markers like anti-CCP do not show disease activity?
Neither in my years of research and talking with investigators nor as an RD patient since 2006 have I ever heard of anyone using an anti-CCP test as a measure of disease activity. It is the most specific test done for RA/ RD, so it is often used (should be always used) in diagnosis.
Two reasons it has not been used as a disease activity measure:
1) No one knew it “did” anything. I’ve heard rheumatologists say “It doesn’t do anything.”
2) It doesn’t change with treatment. CRP and ESR and even Rheumatoid factor can go down with treatments (DMARDs or steroids), but anti-CCP does not.
I’d refer you to a page on blood tests here: http://rawarrior.com/blood-tests-for-rheumatoid-arthritis-what-is-their-role/
Or to the TAG for blood tests here: http://rawarrior.com/tag/blood-test-for-ra-rheumatoid-disease/
In answer to your second question about having pain without a positive anti-CCP lab, the answer is that there are multiple ACPAs (and multiple RF’s), but we don’t have tests for all of them for the consumer / patient at this point. That’s why the word “antibodies” is plural.
Thank you for this article. Over the years, my RA/RD doc has insinuated that I’m either depressed, a hypochondriac or a malingerer. After living with knee issues for over 30 years, I finally got my knee replaced. The Orthopod doc told me I must have a high level of pain tolerance as I should have replaced the knee over 10 years ago. He simply didn’t know how I was walking without assistance on the old knee. To find there is research to support the pain issue independent of other issues makes me feel better about my mind. Of course this is the same doc that thought we should experiment by taking me off meds to “see how I do”. Bear in mind the hypocrite oath is to do no harm. After two weeks I couldn’t get out of bed. My formerly negative RA factor turned positive and my crp went crazy.
Kelly, this is such an important post, and I’ve shared it with friends who are as grateful as I am for this. In the seven years since my onset, I have had severe pain despite being on methotrexate and plaquinel. In fact, I do think that while the DMARDS affect the flu-ish feeling and exhaustion somewhat, I don’t feel like they have ever directly affected my pain levels. When one doctor referred to my pain as “remaining” or “residual” I looked at him with my jaw hanging open. These are not tiny scraps of pain by any means. I think there’s a huge misconception among doctors about how painful this disease is even with treatment. My level of pain has made me doubt my sanity, even though before my onset I was known as having a very high pain tolerance (as in not going to the ER with a broken 5th metatarsal because it felt like a sprain). I know what I experience is real, and yet it is very hard to communicate. Thank you for parsing through the science and the research and sharing it with the people who need to know!
My RA pain is constant ranging from a 4 to 8 on the 1-10 scale. Rarely any visible swelling or inflammation. Have had periods of 10 and times when I can’t grip or lift – all day stiffness – achy muscles – flu like fatigue but nothing you can see!!
Pain never goes away and never dips below a 4. Have been on MARch, Enbrel, Humira, Orencia. Waiting for Actemra.
I am RF positive and ANA positive but never have high inflammation markers even when pain is 10.
Joints are 10 during the night – wake me up.
that can change over time Catherine. Mine used to be low also but they are sky high now. different immune signals cause different markers to rise so it changes as the disease progresses… but I was still telling the truth when my crp & esr were normal…. as are you.
Interesting. I was off the charts for ccp testing. I had little to no “hot red swelling” as some describe. I’ve had times where there has been the most unbelievable pain with little to no swelling. Other times there has been lots swelling (fluid??) but again, never the “hot red” type so often stated as a symptom. I was always perplexed that they are/were unable to somehow quantify/measure/figure out what was going on in a joint that had so much pain that I was unable to move it. I wanted a scientific REASON!! One beyond “inflammation” as a reason, because pain didn’t always correspond to that… I’m glad to know they are getting a more molecular level on these measurements. I had been well controlled on Enbrel and planquenil, but lest I forget that I have RD, I began to lengthen the injections to every 2 weeks and dropped the planqenil last year and am now paying for it.
the disease is acting directly to cause pain. I don’t know why most cannot accept that & seem to prefer to assume we are exaggerating, except for those with mild disease.
From the paper: “We found ACPA immunoreactive cells in the bone
marrow located in close proximity to CGRP+ sensory nerves,
which provides an intriguing histological link that supports the
presence of an interaction between osteoclasts and pain fibres.”
Wow. Interesting. I was an elite endurance athlete and for years I was brushed off from doctors when the pain in my feet just couldn’t be explained. Doctors suggestion? Stop training. No one gave me a blood test even when it spread to my shoulders and thumbs.
I was even pursuaded to have foot surgery in hopes that the pain in the balls of my feet would subside.
Fast forward 10 months post op and my middle finger became involved. Only blood test given was CRP which was normal. Doc sent me to a hand surgeon who said I should lay off sports.
I finally demanded an MRI on my hands and low and behold it revealed erosions indicative only to RA. Still no blood test only suggestion to begin MTX.
I sought out another Rheumatologist who gave me a full blood test and anti CCP was >200. I never had redness and very little swelling and both CRP and ESR are always normal.
Each subsequent doctor appointment I have no visable swelling and although pain persists in my ankles doc says I am doing well and not to worry. Now I am worried as I’m afraid that the disease will just continue to progress.
Thanks for the article. It gives me pause and although I know we need to find more biomarkers I’m left wondering why so many people on different forums don’t speak often about anti CCP. Even if it is only a disgnostic tool it seems to tell a whole lot more.
I’m even more perplexed why some people with high anti CCP don’t get bone erosions and some people do. So much more to learn!
Thank you Kelly.
All my blood work cm back normal except the anti-CCP. Very little swelling, warmth, etc. But at time it feels like my thumb has been slammed between 2 doors. Only the fingers on one hand are affected as of now, but both my wrists unable to bend or extend. Been told by rheumatologist I must have high pain threshold. Six years since suspected but just recently diagnosed. Symptoms began following a shoulder arthroscopy I wish I’d never had done.
Thanks Kelly. You just brought a tear to my eye. I received notification today that my insurance is denying Actemra. I am so devastated I have been holding out for Actemra. They want me to try another DMARD. Today was a rubbish, painful day too – dragging myself around.
So I’m perplexed with my pain,swelling and stiffness because I am seronegative and my anti-ccp are all notmal,but I still have significant pain any erosions on x-rays. Have you done any research or can you point me to any articles that explain why this phenomenon exists? Sometimes I question whether not it’s all in my head !!!
Hey Heidi. If you’ll notice in my article, the word “antibodies” is plural. There is more than one RF antibody and more than one type of ccp antibody. However we only test for one type of each. Over time, there is a tendency for people who are “seronegative” to become positive.
Hopefully there will be more tests in the future.
You can always use the searchbox on this site to find info you need. It’s at the bottom of the right sidebar now. I searched & found this>>
Originally my markers were through the roof, but with treatment came down to normal. I still had stiffness and pain but tolerable.
However, given I am currently living the exciting life of a full flare up that is resulting in horrific bursitis and tendinitis around my joints …but with apparently absolutely normal inflammation levels and CCTP (yeh sure, I shouldn’t need steriods to straighten one leg and walk) then all I have to say about an evidence based approach is thank fuck. If we pardon the French.
RD doc believes me I think – given this only resulted after he tried to reduce my medication (fair – I was doing well). I also look like a pile of crap even if all the scans are coming just dandy.
I’ve posted here for years… I had severe, unrelenting pain as one of my major symptoms, with often very little visible swelling, and erratic blood levels for inflammation, etc. (I was dx at age 10, I’m 45 now). Last year I started on a new biologic , (Cosentyx, I know someone will ask) and after 1 year of very very slow improvement, I’d say I’m in remission. After 13 straight years of NOTHING working. I’m only sharing this because I want to emphasize that the severe pain is NOT in your head, because of depression, a character flaw, low pain threshold, etc. The new meds very slowly improved my joints, my blood markers, but most importantly my pain. I went from being barely able to cope with the pain on morphine, to being able to take an occasional Tylenol. I was starting to think it was just me, but no, the pain is completely a result of the disease. It’s absolutely NUTS that RD pain is treated any other way than being caused by RD. I know my symptoms will be back at some point (no treatment has ever worked for me longer than 3 years) but I’m glad after 13 years to have proof that the pain is not my fault in any way, yours isn’t either.
Anne!!! (And all) I totally feel you!!! All of my tendons are shredded. I have “severe” tendonitis AND tendinosis and Bursitis in my shoulders, elbows, hips and a bulging disc in my back that came front no where! I am overweight but not obese and have been this size-even bigger-for 8+ years. My CRP & SED rates are always within normal ranges but my Anti CCP WAS over 200. THIS ARTICLE AND YOUR POST WAS SO VALIDATING for me!!!! As usual, KELLY saves the day with more information and understanding!