I was wondering because I have read that anti-ccp antibodies are a marker for the most severe erosive RA, how many of you have tested positive and do you feel that they do indicate a more severe disease course. The reason I ask is that I test positive and I have always felt, well, a bit doomed as I don't obviously want to have the most erosive severe disease! I'd be interested in your thoughts and the thoughts of your RD's. also was wondering how many of you smoked. I read that anti ccp antibodies are strongly related to smoking - just curious because I used to smoke - stopped a year before I got RA (how fair is that eh!)
I am positive for anti-ccp, crp, rf (312), ana and elevated sed rate. When I went to the rheumatologist for the first time (1 year ago) I had RA in every joint, plus erosions. She said the RA is "severe, aggressive and unresponsive at this time." Then she wonders why I get discouraged...
Good luck to you, flint! Keep posting.
thanks, we need good luck, it is hard not to get scared when your told you have the worst kind etc - I keep looking for something to tell me mine isn't so bad but I can't find anything - it is very discouraging isn't it - I think dr's forget we are real and get scared and that when they are talking about our condition that we actually have it - wouldn't it be great if all RD's had to have RA themselves before they were allowed to practice - it would be a very different story then I'll bet.
wouldn't it be great if all RD's had to have RA themselves before they were allowed to practice - it would be a very different story then I'll bet. <<
It would sure be a different kind of office visit, that's for certain. I do think I'd like my doctor to feel a little more energetic and ambitious than the typical RA patient though. : )
When I was diagnosed last Jan. I kept looking for research that would say my RA was mild or the prognosis was better, but I couldn't find much so I had to quit looking at all. I about drove myself nuts reading about RA. I think the truth is we really can't say at this point what the prognosis is for us and what kind of course our RA is going to take. It's so hard to take it day by day, but eventually we're going to have to get to that point or we'll make ourselves sick with the worry and miss out on life now. At this point in my life the worry and the uncertainty is harder on me than the RA
My anti-ccp was in strong-positive range and rheumatoid factor was 658 when I was diagnosed Feb 2006.
I don't know that it means we are necessarily "most severe cases", it just is a more positive test than the RF alone. So if you are positive anti-ccp you can be pretty sure RA is a correct diagnosis.
At least that is how I understood it.
Good luck, and don't feel doomed. There is a lot they can do for you, now. Much more than, say, ten years ago.
Good Luck,
Hugs, Nini
My anti-CCP was 383. My Dr's response was " Now I really know we need to be aggressive; this is not good news" Thank you for making me feel better. It is suggestive of future joint damage and systemic complications. It has to be only a guideline--the course of RA is quite variable; as most of us know. This is a relatively new test---with it's true meaning to be determined as far as I'm concerned. Lou