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Concern about prognosis with positive RF factor and anti-CCP antibodies

I was diagnosed with RA at the age of 41, about 2.5 years ago. It came on aggressively and I was quite crippled for about 9 months. Luckily Enbrel got me under control, and weekly Enbrel has kept me symptom free for the past two years. I was on methotrexate but asked to get off due to liver side effects. I was on plaquenil which did seem to help but I was having frequent PVCs and had a mildly long QT so they took me off.

My diagnosis was made with positive RF factor and anti-CCP antibodies >250. I know both these tests correlate to more aggressive disease. My rheumatologist has prepared me that it may be more difficult to manage, though luckily I’m really good the past couple years.

Any sense in rechecking these tests? I’m concerned about my long-term prognosis despite feeling great right now. I know sitting around and worrying won’t help, but it’s hard to wrap my head around all of this sometimes. I always ask him if RA ever goes away - sadly it does not seem to be the case. Thanks for any advice!

  1. Sorry you're dealing with this. But you're in good company.
    Curious: what dose of MTX were you on with the Enbrel? [Hard to imagine the liver enzymes would go up that quickly due to the MTX....maybe it was due to another issue?]
    As far as rerunning the tests....if it was me, I wouldn't. It's either going to be the same, worse, or better......and that can keep how often will you rerun them?

    1. Here's how it was for me with respect to MTX: they ran blood tests every week for a month, then every two weeks for another month, then once a month for a year, then every couple months while I was taking 25 mg MTX and stable liver enzymes. These days, 30 years after diagnosis, I still take MTX, but 7.5 mg weekly [synergizes the Humira]; my bloodwork is run every six months.

      I didn't drink not one drink for decades. About two years ago a friend convinced me to have a glass of wine each night...."goof for you." Big mistake. My liver enzymes shot up like gangbusters.

      So no, it is NOT a ridiculous thing to require you to do.

      Also, with MTX, the ONLY side effect I had at max dose was a little bit of nausea a day or so after I took it. But six days nausea free. I did lose some hair...big deal. I was deliriously happen to be able to stop the joint inflammation. Cheap price to pay.

      So the frequent bloodwork in the beginning is completely normal with MTX.

      I don't see this disease as scary. I personally like to be in control. It angers me that RA will be in control if I don't take the meds.

      Something to know about MTX - it's basically a cancer drug and cancer patients who have had chemo with it laugh at me when I tell them that I took 25 mg once a week. Their dose is soooooo much higher. When I learned that I decided I was going to stop being a wimp. LOL

      And for the record, I have never once taken off a day or even hours from work or any event due to MTX nausea.

      Lastly, to those who wonder if MTX is still working......if you were to go off it as I did when I was stuck overseas longer than expected, you might find that there's a honeymoon period of about 3-4 weeks. And then the pain hits all over again. That's when you know the drug really does work.

    2. Sorry for the typos....wish there was an edit button.

  2. I think I would follow the lead of the rheumatologist.

    1. Hi . Sorry you have had this experience. I can tell you that, in general, the rheumatoid factor test (RF) is used for diagnosis and not treatment planning. The Anti–cyclic citrullinated peptide (anti-CCP) antibodies can be more indicative/predictor of the severity of RA, but is also not considered particularly relevant for basing treatment decisions. This research article goes into more specific details on this: The conclusion sums it up nicely: "Despite their strong association with the presence, development, and extent of erosions, anti-CCP antibodies alone are not a sufficiently accurate measure upon which to base clinical treatment decisions. Knowledge of anti-CCP antibody status is most informative in RF−negative patients." Of course, your doctor should be able to describe the relevance to your specific case and may have reasons for being interested in these tests. Hope this information is helpful. Best, Richard ( Team)

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