RA or Parvo B19?
Hi Everyone,
I was diagnosed with RA in 2012 and have been on 20mg of methotrexate (and at times a combo of other meds) since. I spent years with one rheumatologist, then switched insurance, and had to find a new person at Kaiser. I went through a couple rheumatologists who were pretty awful and one told me I had polyarthritis and fibromyalgia because my labs were excellent. I ultimately found a decent rheumatologist who at least believed my initial diagnosis. Now she is retiring and I had to get a new rheumatologist.
My new rheumatologist is skeptical that I have RA and even suggested to taper or go off of methotrexate. Why? After a decade of lab results of RA factor, ESR, and C-Reactive protein my labs show no indication of RA. Additionally I have no visible joint deformities/erosion. However, I do experience symptoms.
I feel so confused because it feels as though one camp of doctors say, my labs are good because it shows that methotrexate is doing its job. Methotrexate is suppose to put patients in remission and prevent joint damage.
Now my new rheumatologist suggests that maybe my initial onset was not RA and maybe it was virus called Parvo B19? Apparently, having good labs is not normal even on treatment. Also since I have no physical signs of RA, that’s apparently not normal?
I would love nothing more than to stop methotrexate so the idea of stopping it made me instantly cry tears of joy. I felt so relieved! But… is this real?
Then I went and looked at my labs from 2012/2013 and recalled I was diagnosed through anti-ccp labs. My anti-ccp labs were extraordinarily high. My rheumatologist at that time said that indicated a more severe form of the disease. My RA factor, c-reactive, and ESR have never been really high. At the most they were just slightly elevated.
In the last 10 years I have not had a single anti-ccp test. Is that important?
Have any of ya’ll been through this?
My head is spinning.
Thank you very much for taking the time to read this and I hope it makes sense.
I totally get why your head is spinning. It’s so frustrating when doctors say completely different things, especially after you’ve been managing RA for so long. I hope others can chime in and share their experience and feedback on this issue. I’d definitely ask about retesting your anti-CCP and maybe even get a second opinion. You know your body better than anyone, and your symptoms are real, regardless of what the labs say. Sending support your way! -Latoya (Team Member) 
Hi
. First, let me echo Latoya about understanding your frustration and the anti-CCP test. Although it should be noted that, while a anti-CCP positive test represents a very high likelihood of RA, a negative result does not rule it out. I also want to note that, as discussed by Andrew in this article, up to one-third of patients are seronegative, meaning that the rheumatoid factor test is negative: https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story. As you noted, the goal of early, aggressive treatment is to control RA, prevent damage, and potentially put a person into remission. Your hesitancy to stop treatment and potentially bring back symptom is more than understandable.
There are a number of conditions that can mimic symptoms of RA. Did the doctor explain why they would focus on Parvovirus B19? While it does share joint pain, it also has numerous symptoms that are not common to RA (see: https://www.cdc.gov/parvovirus-b19/about/index.html). Also, don't hesitate to ask questions about the potential impact of stopping treatment and what would come next if symptoms would return (sometimes treatments are not as effective upon resuming after stopping). Also, you are always entitled to a second opinion. Wishing you the best and please feel free to keep us posted on how you are doing and to ask additional questions. Richard (Team Member)Hi
,
Regrettably, I am seropositive.Hi
. I know this may sound odd, but one positive of being seropositive is that it removes a lot of the speculation those who are seronegative receive (as you see here) about their diagnosis. You mentioned below about getting ready to start your 5th treatment. Often those who are seronegative have to deal with doubts on the diagnosis. I personally know someone who is seronegative and has been treated for about 15 years who still sometimes questions her treatment and diagnosis. Really hope your next treatment does the trick. Best, Richard (Team Member)
I have tried methotrexate twice, two different doctors, and the results were the same, it never worked for me. My labs were not good. So, I've tried four different meds to date and they worked just for a while. I will be starting my 5th medication this month.
Hi
. Many here understand the frustration with the trial and error method of finding a treatment. The good news is that there are now more options then ever. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 46 years ago - before modern treatments, with the damage to show for it. Several years ago she finally started a treatment that brought her inflammation numbers into the normal range for the first time. I know another contributor, , has had a similar experience. I don't want to paint with rose colored glasses, we know it is not easy, but the lightening can strike. Please feel free to keep us posted on how things are going and to ask questions. Wishing you the best. Richard (Team Member)
Thank you for sharing this story; it gives me hope for relief. I started a new medication one week ago, so I am hoping that this medication will bring me the relief that I am seeking.
Thank you, Richard. Thank you Dan 👍
