I went to the rheumy today and got a copy of my latest results. My CCP IGG antibody came back pretty high again. Does anyone else have this? Of course, my sed rate is still high, and I have protein in my urine still. I have been having major swelling in my hands and feet. I looked the CCP up on the internet and it says that it is 95% indicative of Rheumatoid Arthrits and 5% for SLE. Does anyone else have RA and SLE together? Lucky me!
Or does anyone have a high CCP IGG and not have RA and only SLE? I wish that my rheumy would have explained it to me. I would call him but it's like getting through to the President, you don't! Any info out there would be great!
Thanks so much!
There are MANY patients that have "overlapping" diseases. In fact, I think most of us do on this board! I have Lupus, APS (blood clotting disorder that goes with Lupus), Sjogrens Syndrome (dry eyes, nose, mouth etc), Diabetes, and Raynauds. I suspect that I may have RA too because my joints are going all wacky on me, and it is seldom that joint wackiness goes with Lupus. Its late and I cant think of a better word other than "wacky" LOL Anyway!
The Anti-CCP Antibody is primarily used as a diagnostic tool for Rheumatoid Arthritis. It can be helpful in diagnosing Lupus too, but like your doctor said... the percentage is low. You could have Lupus and RA, which isn't so bad as long as everything is treated. If you have any questions, or need more help please do! Take care and talk to you soon,
I finally found an article on RA that puts anti-CPP into a context. It was on an electronic medicine website (sorry, but Board rules disallow posting the actual site address). I printed out a few pages & extracted the following info. But not having one iota of medical training, I obviously can't judge accurately what this all means, Leslie; so I hope your drs. can shed more light ASAP. Anyway, here goes...
In the Lab Studies section of this RA article, the following were mentioned:
* ESR and CRP (both correlate with RA disease activity, and CRP correlates with disease progression)
* CBC (findings of interest include anemia, hypochromic anemia, thrombocytosis, leukocytosis, and leukopenia)
* Synovial fluid analysis (findings of interest include evidence of inflammation; and dominance of neutrophils---as opposed to dominance of mononuclear cells; and low glucose levels in pleural, pericardial and synovial fluids)
And now for the main thing I think you're after, immunologic parameters in RA:
* RF is only present in 60% to 80% of RA patients *sometime* in the course of their disease [similar to much we read separately about lupus, this test thus doesn't appear "fully diagnostic" for RA!]
* Antinuclear antibodies are only present in 40% of people with RA, and test results for most of the nuclear antibody "subsets" are negative [yet another parameter that's slippery and not fully diagnostic?!]
* There are some *newer* antibodies, anti-RA33 and anti-CPP ( = anti-citrullinated proteins). At the time this article was written, the tests were sp new that the article states that further validation is needed before they go into general usage... For the anti-CPP test, it's *hoped* that it will have a sensitivity and specificity like the RF test but, better, that it will be able to show positive results earlier in the disease process.
Plus there are imaging studies used in Dx'ing RA:
* Radiographs (hands, wrists, knees, feet, elbows, shoulders, hips, cervical spine & other areas if indicated)
* MRI (usually done on cervical spine if warranted)
* Sonography (joints not easily accessible, like hip joints & shoulder joints in overweight patients)
* Bone scans (to look for inflammation where there is little visible swelling)
* Densitometry (to look for osteoporosis)
There's also an ACR classification system for RA... Similar to the lupus ACR classification system, it's a *classification* system, not a straightforward *diagnostic* system---meaning, I think, that drs. have to use all their training & instincts as well, to make the call. In RA, you need 4 of 7, with (1) items 1 through 4 being present for 6 weeks, and (2) items 2 through 5 must be physician-observed.
Other than all this, PIECE OF CAKE, huh?
Have you tried posting on any of the arthritis boards to see what the latest thinking/usage for this new-ish anti-CPP test is? Have you checked out the foundations for more current info on RA? Has your dr. performed imaging studies to look for signs of joint erosion? Have you asked your dr. if "early" treatment of *your* individual symptoms/findings would be essentially the same, whether it's SLE, RA, or some combination of the two? Asked your dr. to comment himself on how useful, reliable, accurate, etc. the anti-CPP test is viewed as being?
In your shoes, I'd be curious, too, to say the least... Anyway, I hope this helps some, as opposed to muddying the waters more. Please drop us all updates when you can, OK? As always, with my best wishes, Vee
Now that I found that anti-CPP stands for "anti-citrullinated proteins", I found even more articles on it using my browser.
It looks to me---with my total lack of medical training, mind you!---that *some* researchers, as late as late 2004, believe it's NOT diagnostic to RA but is instead a result of underlying inflamamtion that isn't *necessarily* RA.
This may be a test whose meaning is still in a state of flux...?
I just read your reply - my computer has been down with a virus (what a disaster). Thank you for all that information! Wow! I looked into everything you said to and showed my doc who agrees, just not for me. Boo! My brain is spinning!
So much has happened since my post. My rheumy said that I will have to start methotrexate in 3 weeks if the Prednisone doesn't kick in soon. He said that there were several other tests that show SLE and RA both. He said that Plaquenil helped with early RA, but I am already advanced. Just like that! He was suspicious of this before and basically diagnosed me with it, but wanted to watch it over the past 6 months. He is now very sure from all the other tests. My lupus symptoms get better and better, then I have a bad day. Which he said is normal. But my joints are now swollen and red like water balloons. They only get worse. I am sad because my Mom suffers with Ra, she is able to function but at a much slower pace. I help her out a lot. Without her meds, she would not live very long - it's very aggressive. So, thank goodness for the meds. My uncle died of RA complications, my nephew is mildly disabled (23). I feel somewhat lucky to catch it before I ended up in their shoes, but I am still blue!
I had a goal when I was diagnosed in October with Lupus, that I would do what I needed to do to get better, changing my lifestyle, taking my meds, following my doc's orders, research - all this to be able to run again. I used to run everyday of my life and loved every step. It made me feel whole. I keep telling my doctor that I will run again. He tells me to downgrade my goal to power walking! This goal was the only thing that keeps me going forward. Now I am afraid that I won't even be able to power walk. I hate being held down, ya know what I mean? The Plaquenil was giving me my life back, able to work full time, etc. I was so close to running, I swear. Now my joints are painful like toothaches! I never really greived with the SLE diagnosis because there are so many resources and treatments now, and of course all of my friends like you on this website. But this dual diagnosis has really shot me down. Maybe it's just a mood swing! Ha, ha! I guess it's probably the fact that I am turning 34 in a few weeks and the Methotrexate basically is taking away our chance to have kids (we have none). On the other hand, I have to be grateful that I can get treatment.
Thanks so much for everything, Vee! You're so awesome!
p.s. How's the doggies? I have a chihuahua/collie mix - he's crazy!
Your rheumie sounds like a very careful & communicative dr. Really. None of my drs., except my current rheumie (a "keeper" ) ever sat me down and went through my concerns and questions like that. For that much, I'm glad for you.
As far as running, walking & the like, might there be something ELSE to consider while certain joints are inflamed? I used to do step aerobics, but the shin pain (the first thing that always goes wrong with me) became undo-able & I finally concluded I was doing much more harm than good. Maybe you could ask about something like floor Pilates, which *may* not stress the knees as much as yoga? Your rheumie may have the best insight/advice?
I totally feel for you, about wanting a family. I was on the wrong meds for the wrong condition from the very first year of my marriage, at 25---meds you can't take while pregnant. We discussed adoption many the time, but I was so dicey so often that I feared my ability to do reasonably well with any little one. I honestly think, even with all you are dealing with now, that you've come a whole lot closer at a younger age to understanding & dealing with your health issues---so that in itself can give you hope based on real knowledge, on reality. You have my deepest, "bestest" wishes on this!
My doggie is great & glad yours is, too. Give him a big pat from me, OK? Pets bring so much joy. And some chaos, too, huh? Good hearing from you! Hang in there & stay in touch with us all when you can, OK? Always, Vee
I just remembered that the clubhouse where we have a house up north has water aerobics every morning around 10 am! Perfect - before the sun gets hot. I'll drag my Mom down there, it will be good for her, too. Great idea! I can't wait until it starts after Memorial Day.
I hear what you're saying about the health issues at my age. I have to keep remembering about the positives involved in my situation. I could have had a baby before my diagnosis and not be able to take care of him/her. I seriously don't think that I could physically be a good parent until I recover. I remember that I was scared to death in my Peds clinical that I would drop those newborns! I would avoid getting assigned a little one. I just know how much my husband of 2 years loves babies. I know that he loves me more! He always tells me that I am what's most important, over his desire to have kids. I still have hope, only time will tell.
Thanks again, Vee!