low anti-CCP # | Arthritis Information

 

Dr just called and my anti-CCP # was below 20 which is great news.  Given that, how does that change the diagnosis?  Still considered RA or now just nothing?  I had a low positive RF (17 with <14 being normal)  Because I have all symptoms but no visible swelling, he's called it UA with the thought that most UA becomes RA.  From what I've seen and read, a high CCP # is the main predictor of whether UA will become RA so if its low does that mean that its not headed that way?  If so, is treatment with Plaquenil, etc even necessary or do I just need to learn to live with things they are?

It's not necessary that you have a positive CCP for you to have RA.  The sensitivity of the test is about the same as RF.  The importance of the test is that "IF" the results are positive, it's likely you have RA.Why worry? If it progresses you'll know and see the changes. Enjoy today.

Your medicine should continue unless your symptoms aren't being helped by it. That may be months in (to see the full effect) if it does. If it doesn't help, it should be stopped.

Relax, it sounds like you are in good hands.


I guess my anxiety boils down to that I'm not sure which is scarier--the dx of RA or the idea that I've lost my mind and people will think I'm crazy and making up or exaggerating the symptoms when there's not anything "wrong" with me. The initial dx gave me a place to land and to start figuring out how to deal with it.  The idea that we still might not know what it is makes me feel nutso!

You can have RA, even with a low anti-CCP.  My anti-CCP was around 15, which I guess means negative.  However, I am also still only dx with "inflammatory polyarthritis" because my symptoms are not yet sufficiently symmetrical for my doctor to justify RA designation in my chart.  He probably has my best interests in mind there (although the darn thing is spreading). 

Sunam, does UA mean undifferentiated arthritis?  From what you wrote, it sounds like you're living with the same DX as me.  It's like you have a DX, yet you don't.  But my doctor's goal was the same...keep it from becoming full blown RA.  I've wondered the same thing, if there's an improvement in the blood work (in my case the ANCA is now normal) does that mean I no longer have the disease?  And can I cut back/stop the Plaquenil and MTX?  I don't know about the MTX, but I can tell you cutting back on the Plaq. was very bad for me.  So I'm thinking that perhaps your disease is just "under control" and since it's not really gone, you'll need to stay on your meds.  You could always ask your doctor about cutting back and see what happens.  That will give you a good indication of whether you're in remission or whether your symptoms are just being controlled.  I know how hard it is to have an undifferentiated DX.  It's not much to hang your hat on, but be reminded that it's better than having a firm, undisputed case of RA, lupus, etc.  If your family/friends don't understand, or don't take your disease seriously, just limp a little once in a while to show them you really do have medical issues. 

I tried cutting back on my Plaquenil when I thought I was in remission (my RD's recommendation).  I cut back from 2 pills a day, to 1 pill.  BIG MISTAKE!  I started flaring worse than before and even though I went back up to the original dosage, I never got back to my apparently "drug induced" remission.

I'm in the same boat with UA (Undifferentiated Arthritis, Undifferentiated Inflammatory Polyarthritis--whatever it's called?)  the only difference is that my PCP insisits it is RA and the RD calls it UA and refuses, so far, to treat it with anything but Celebrex and Tylenol.  I don't have much swelling and when I do have it, it is mild and infrequent. So, I don't know what the answer is to your question.  It seems like the RD's all have their own ideas how to treat things.  If you trust and believe in your RD, then I guess, you go with what the rd says.  Mine, I am not so sure about.  I've decided to go one more time and see what he does, and then make up my mind if I will find another RD for a 2nd opinion.  My achiness also seems to be spreading, now into another pair of joints.  It is really frustrating.  I'm about resigned to the dull achiness in my joints and am beginning to think it is just something I will have to live with -- it may just be mild RA and that's all there is.  Mild RA will never fulfill the ARC criteria since that is based on folks who have had sever RA for at least 7 years (it was developed to qualify a population for research purpses), but some RD's act as if they think the criteria was writen in stone.

Lcarter,

lcarter, I agree, please get a second opinion.  It worries me that your aches are progressing.  That's the whole point of hitting the disease hard (even undifferentiated ones) early on...to stop it in its tracks before it becomes full blown anything.  Of course, that's just my RD's opinion, but I feel much better than before, if not perfect, so I tend to agree with his strategy.  A second opinion is definitely in order.  Your RD may see things in your medical history to give him good reason to defer treatment, but you won't know until you talk to another doctor.  Thank you all for all your help. It is nice to know that we UAer's are not alone. For me, this has been going on for over 10 months now, maybe even yrs with flares far apart.  I have seen this RD 2 times and each time he says he doesn't see any visual swelling.  I'm to go again in another month--maybe the 3rd time is the charm!   I think, although I am certainly no dr, that a lot of us with UA really have Mild RA.  The question is, which of us will develop into a more serious form of moderate or sever RA?  If it does remain only a mild form (and that does happen for 2 out of 10 with RA says the literature), and depending on age at onset (I am 64 now), is it really worth taking a DMARD when there are so many side effects? That is a real dilemma...how bad will it get without the big guns?  Its kind of like playing Russian Roulette.  I promise if he doen't impress me on this next visit, I will go see a different rd as you all suggested and see what someone else thinks.  What meds have your rd's got you on while they play the "wait and see" game?  My anti-CCP was only 10 and is positive.  Are there different types of anti-CCP tests that  have different ranges?  My test said anything greater than 5 was  positive.There are two versions...I only know this cause last time I was at the pain dr. I looked at my chart.  It gave my anti-ccp #'s and one was the new guideline and the other said old guidelines.  Now, as to what equals what-no clue.Hey Kyd -
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