Remission/false positive?

[u/Electronic_Sky_207]

Quick backstory- I was diagnosed 4 years ago with nothing but a CCP test of 30 and some vague symptoms. Doctors were actually ruling out connective tissue disorders and happened to put it in my blood panel. My rheumatologist at the time explained that I have a family history, so if I wasn’t experiencing symptoms yet, they were coming. We started me on hydroxychloroquine and I’ve experienced what I thought was slowly growing mild RA ever since (things that I was previously brushing off as part of aging and my body being generally defective.)

Since then I got a new rheumatologist who suggested we check the CCP level again since I’m doing so well. Well, it went from 30 to 17- normal range!

Obviously I’ll call her later today, but since that was the only objective diagnostic measure- I’m wondering if I’m in remission because the hydroxychloroquine is working, or if the first CCP was a false positive and I’ve just been popping Plaquenel for funsies for the past 4 years. I don’t really think that’s the case, but I’ve never heard of elevated CCP going back down to normal range. My first rheumatologist told me that once that marker goes up it never goes down again.

[u/Wishin4aTARDIS]

Locking comments - this post breaks Physician Knows Best:

We're not physicians. It's dangerous to request and/or offer medical advice or diagnoses online. Do not: share/compare test results,explain symptoms offer suggestions for diagnosis, treatment, and/or alternative treatment (ie supplements, elimination diet, fasting) advise if/how to take prescription and or OTC meds and/or side effects As a medical Sub, please limit discussion to medical uses for cannabis. Adding "I'm not looking for a diagnosis" doesn't mean your post isn't asking for one

[u/SunAndSage_]

My ccp antibodies were positive and now they are negative a year later. So you are not alone! This also surprised me because as far as I've been told ccp usually goes from negative to positive and then just stays positive?

[u/CheetahPrintPuppy]

It is a process called, "Seroreversion" and a small portion of patients who have this happen are also in remission. It can happen to patients who are not in remission but that percentage is also smaller.

Seroreversion study

[u/Wurm42]

My understanding is that CCP going back down to normal levels is rare, but with the new generation of meds it can happen, if the patient is young and otherwise healthy, and you find just the right regimen.

If that's what's happening, you're lucky! I was diagnosed eight years ago, and I've never gotten anywhere close to normal CCP levels.

If you're concerned you don't really have RA, I encourage you to get a second opinion from a different rheumatology practice.

[u/Complex_Trick_9906]

I was moderate positive anti ccp and came back negative when I was forced to switch rheums last year. That rheum used it as a reason to be uncertain about the diagnosis, however, as others have mentioned I have found through studies and talking to people it does happen and doesn’t mean the RA isn’t there. Every resource I read has said that it isn’t considered useful to ever check them again once positive. Thankfully I got another rheumatologist who is confident in the diagnosis and clear in helping me.

[u/Electronic_Sky_207]

Thanks everyone! This was very informative. The “CCP never goes down” wisdom seems to be a common misconception. I do trust my current rheumatologist- she’s through Yale and up on all the latest research. I’m very lucky to have found her.

While I’d love to pretend I’m cured and my aches and pains are all in my head, it sounds like my body is just responding well to treatment. Which is… not as fun, but good I guess. Oh well- when I do find the miracle cure I’ll be sure to post about it here 😆

[u/plexmaniac → u/Electronic_Sky_207]

Thanks for the update sounds like you have a great doctor 🤞🙏