Rheumatoid Arthritis Support Group

Yesterday my doctor told me that because of my high anti-CCP and my positive RF that my disease is more aggressive and damaging.

I would be interested in hearing from others that also have a positive RF and high anti-CCP. Do the meds help or is the disease progressing at a fast rate.

Kinda freaked out here!

My RF was 1,360 (normal 0-20). My anti-ccp was over 250 (normal 0-20). All other labs, including sed rate were normal. That was 3 months ago. I'm currently on 15mg mtx. Still have flares but not nearly as bad as prior to being treated. All of my xrays showed no joint damage at all. I was surprised, but relieved. My Rheumotolgist said he is optimistic that I have several years of good quality of life in spite of those levels. He's a true believer in mtx being the best defense in battling the progression of RAD. We will see....

wish I had an answer for you but I simply do not know. Understand being freaked out. Spending time on being calm. Ha much eaiser said than done. Peace Peace Peace I just want some peace. Let us know what the Dr. says.

kjv1956

Jlynne, I've read that having positive labs may mean the disease will be more aggressive. Have read the same about rheumatoid nodules, too.

My CPP was >100 and RF 62, both positive. I also have rheumatoid nodules, my fifth one just appeared just below the right elbow. According to the literature, I should have a severely active case of RA. But I don't. It's "moderate" according to my rheumy.

There are so many variables that determine what the course of the illness and the outcome will be. The best thing to do is stay on DMARDs to slow it down as much as possible, and that would be true for us all, I believe.

There is something called an ACR score in rheumatology that helps to make the clinical impression more objective. Your doctor may be using that, or even if he isn't, I'd think his impression of the aggressiveness of your RA is based on clinical experience, and not just the fact that your tests were positive. From my review of the literature, you are more likely to have a more aggressive case but it's not a sure thing.

But I think the best thing is that he's treating it as if it were aggressive. He's not gonna monkey around! That's good!

I agree with Kym, the aggressiveness is mostly determined by clinical evaluation (number of swollen, painful joint, stiffness, limitations in range of motion, etc), and they then look to tests, and x-rays (to see if there is already visible damage). If your rheumy thinks yours is aggressive, then don't be afraid to test treatments, until you find a good one. There are enough meds out there to have high hopes in finding one the will delay your RA. Most RA drugs are quite aggressive any way, so any aggressive form of RA will be targeted.

RAD is a chronic, "progressive" disease.

Progressive is the word that concerns me the most. There are no meds/surgeries to stop RAD. However, there are meds to slow it down...considerably. In other words, we are buying time.

Please, do not let your fear stop you from trying the meds. Remember you can stop anytime.

I honestly believe there is a successful combo of RAD meds for everyone that can take them.

Just seems to take trying them and zeroing in on what works. Most of the time, this is not achieved overnight, but over a long time.

As scared as I was when I was told I have RAD and must begin treatment, it was nothing compared to when I was told I could no longer take the meds.

I...was...terrified.

For by this time I knew much more about RAD and knew I needed the meds.

It's ok to be afraid, just don't let it stop you from having a good quality of life.

Hugs