Asked by JJ
I was diagnosed with polymyalgia rheumatica in January. The rheum called me a "classic case." Then my blood tests results came back and the anti-CCP was in the mid 200's. My dx was changed to RA. The anti-CCP was repeated about 2 weeks after the first one and came back at 156. I started on prednisone and methotrexate....tapering down the prednisone until I was finally off it. As I got off the pred, my symptoms got worse and the rheum started pushing biologics..even though I was clear that I wanted to try all traditional options first (like triple DMARD). All this time, my symptoms were very PMR..no swelling at all, in the large joint areas and feeling like muscle pain. My x-rays show no erosions. My hands and feet are no involved. The rheum keeps ratcheting up my RA drugs, but i think I have PMR. Maybe the anti-CCP means risk in the future for RA, but I don't think I have it now. The rheum must also be wondering, because he repeated my anti-CCP this month, June, and it is only 22. Does the drop in the anti-CCP mean anything? Should I be getting a second opinion? I have gone back on 5 mg prednisone and it has caused my symptoms to diminish greatly
I can understand your frustration. The thing about RA is that it can be hard to pin down, especially in the beginning a can sort of come and go. The anti-CCP test is relatively new and is very exciting because it is very accurate. When it's positive, 80-90% of the people who test positive have RA. The reason it's exciting is that it is positive up to 15 years before someone develops RA and rheumatologists believe that it will in the not-too-distant future lead to a situation where people can be identified before they get the disease and that will make it possible to with new meds turn off RA before it starts.
If your anti-CCP is positive, but you don't yet have any erosion, it may be that you are in the very early stages of RA. You mentioned that your x-rays do not show any joint erosion. Studies indicate that an MRI will show RA damage up to six months before they appear on x-rays, so you may want to consider asking your doctor for an MRI.
To be honest, it does sound to me as if you may be in the early stages of RA, but if you would feel more comfortable getting a second opinion, go for it. Remember, though, that the sooner you get the disease suppressed, the better the chances that you won't develop any joint damage and that's the goal. To protect your body from damage that could lead to deformity and disability.
And that brings me to my next point. Traditionally, rheumatologists treated RA using a pyramid of treatment. The key word was to "go low and go slow" - you started with the less intense drugs, waited to see if they worked, if they didn't, move up the pyramid, etc. The problem with this approach is that it leaves your RA free to do all kinds of damage in your body. The Biologics has enabled us to actually go into remission and has therefore change the treatment approach to one of early and aggressive treatment to achieve remission.
Lots of stuff to think about and I would recommend you do some more research. Check out my post on an RA forum on new treatments for RA for more information about anti-CCP and treatment approaches. You may also want to check out the Langone Medical Center's webinar about RA, which touched on many of the same issues as the forum did, but add some fascinating permission about potential development and causes of RA.
Good lcuk! Please keep us posted on how things go?