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Testing, Testing, 1, 2, 3

Testing, Testing, 1, 2, 3

“Well, your tests look good.” I don’t know how many times I’ve heard this, but if I were to take a guess I’d start by multiplying the 14 years since my diagnosis by the average of four routine visits I make a year to the rheumatologist, and that would give me a pretty good estimate. I know doctors rely on tests. Doctors are scientists, and scientists test their hypotheses for findings. That’s all well and good, and can often be very helpful. However, tests are only as good as humans are capable of making them, and that means that many tests for health conditions are not 100% reliable.

RA symptoms

Until a year ago, I never “tested positive” for rheumatoid arthritis. When I was diagnosed, I did not have high levels of rheumatoid factor, a high SED rate, nor elevated levels of c-reactive protein. On paper one would never know that I had an autoimmune disease, let alone a specific diagnosis of RA. However, while I looked good on paper, my physical appearance was a different matter. My fingers were so swollen the skin cracked, I had three nodules present on my hand joints, and many joints throughout my body were tender to the touch. Therefore, a physical exam gave my rheumatologist far more helpful information than my test results did. This was also the case for self-report. I knew nothing about RA at the time of my diagnosis, and didn’t even really know what rheumatology was. As my doctor asked me questions about whether I had stiffness, and if there was a time of day the stiffness was worse, I had no idea what a common component of RA morning stiffness was. Looking back, I see that I was a textbook case of RA, except when it came to the test results. My rheumatologist felt confident in his diagnosis based on physical exam, self-report, and x-rays, and explained to me that a minority of people with RA do not show abnormal lab results.

Laboratory testing

In spite of that, he continued to run labs at each visit, just as the next two rheumatologists I’ve had have done. Whether I’m feeling pretty good or in the midst of a terrible flare, my bloodwork never indicates the level of inflammation that a physical exam detects. I don’t know whether doctors think they are sharing good news with me when they cheerfully report that my test results from the previous visit “look good.” I don’t care about the test results; I care about how I feel. If I’m contending with pain, swelling, stiffness and fatigue, it is no consolation to hear that my labs look good. Having routine blood tests has felt like a waste of time, discomfort, and money, considering that their findings are in such stark contrast to how I feel. Therefore, when my rheumatologist asked me about a year ago whether I’d like to have the new Vectra test performed, I was ambivalent. Considering that it was unclear whether my insurance would cover it, I was hesitant. I also had my doubts that this test would be any different than the other tests that had been run for years. However, I told my doctor that if she thought the results would be helpful to her in treating me, I was willing to go ahead with it.

At my next visit, she produced a packet containing my Vectra test results. The Vectra test measures 12 different biological markers to arrive at a score of RA disease activity that ranges from 1-100. On this scale, a score of 1-29 is considered low activity, 30-44 is moderate activity, and 45-100 is high activity. My number on the day of my Vectra test was 39. For the first time in my life with RA, I had lab work that indicated exactly how I felt.

Being able to look at that number did not change the way I physically felt, nor did it change the way I felt about having RA. It didn’t even change my doctor’s course of treatment, as she had already determined that I was at a moderate level of disease activity at that point in time. Yet, it definitely affected my perspective on testing and research. Finally, humans had developed a test that could measure my disease activity. While this hasn’t had any real ramifications on my life, it does make me feel hopeful for potential medical advancements. If researchers have been able to create a test that accurately measures my disease activity, maybe they’ll eventually be able to create a treatment that cures it. This test is a baby step toward the realization of my most powerful RA wish, but even a baby step toward a cure is significant when it’s a step in the right direction.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • EmmieL
    3 months ago

    I just got my Vectra DA results, which showed Moderate RA. I, too, was seronegative and although I have a great dr who has treated me based on clinical symptoms, I literally broke down and cried. Validation and clarity at last! I finally have something in writing that matches how I feel. All seronegative patients should have this test.

  • Tamara Haag moderator author
    3 months ago

    Hey EmmieL, I’m so glad you got that validation. Your experience sounds very similar to mine, and it has been a profound reminder that tests – and treatments – are only as good as the medical knowledge creating them, and that any signs of that medical knowledge increasing are encouraging. I hope the tests and treatments will continue to become more and more effective until they eventually find a cure for this disease. In the meantime, I’m grateful for good doctors and for any validation we can receive. Sharing our stories is another way of doing that, so I thank you for sharing yours.

    Wishing you all the best,
    Tamara

  • Monica Y. Sengupta moderator
    3 months ago

    Hey @emmiel! Thanks for sharing! I am so glad you got the test to back up the clinical symptoms. I am still sero-negative, even with the Vectra, and though I have a great rheumatologist who treats my RD aggressively, I wish I had some lab work behind me when meeting new specialists!

    All the best, Monica

  • Kimberly
    3 months ago

    Yes Ma’am on being in the medical field! Even if we make the worst patients! Occupational Hazard!
    But boy it sure makes a big difference when you deal with doctors, lab results, and finally answers! Be your own advocate fellow friends!

  • Tamara Haag moderator author
    3 months ago

    Thanks for sharing, Kimberly! Your encouragement is helpful. Wishing you all the best, Tamara

  • melmason
    3 years ago

    I’ve been seronegative most of the time I’ve been diagnosed, with the exception of an elevated CRP when we were searching for answers to my physical issues. I stayed on just plaquenil & methotrexate for a while, but symptoms got worse, so I finally agreed to a biologic. My rheumy decided to do a Vectra DA before we started, and much to my surprise, my level was 44…which is moderate to high disease activity, and correlated with how I felt. I’m a medical professional, and even though my rheumy diagnosed and treated me based on exam and self report of symptoms, I was seriously beginning to think I was completely crazy because the labs didn’t back it up. I hate that I spent all that time doubting myself. I was actually relieved when the test showed there was something wrong with me! It also helped to confirm to me that a biologic was necessary. I resisted biologics for a long time because of the side effects. And I probably have at least some irreversible joint damage that could have been prevented if the labs had confirmed my diagnosis sooner. Now, I’m a nurse, and I know the importance of early and aggressive treatment in order to prevent joint damage and preserve function. And I had a doctor who didn’t let the negative labs keep her from diagnosing and treating me. And yet, I STILL resisted biologics for a long time because I let the negative labs cause me to doubt myself. And now, we’re having trouble getting the RA under control. After almost a year on Remicade, I’ve switched to Orencia and just had my first dose, because the Remicade just wasn’t controlling the symptoms. I can’t imagine how hard it is for someone with no medical background to navigate the confusing world of RA when the diagnosis isn’t immediately clear by diagnostic testing, and doctors aren’t as wonderful as mine and don’t take you seriously, I say all this to tell you DON’T doubt yourself. Keep pressing for answers. You’re not crazy. Hopefully it won’t take you as long as it did me to pursue aggressive treatment just because the labs didn’t match with how I felt. I’m so grateful the Vectra helped confirm to me what my body was already telling me. I don’t feel crazy anymore, just sad that I likely have damage to my joints and who knows what organs because I doubted myself.

  • Kimberly
    3 months ago

    Yes Ma’am on being in the medical field! Even if we make the worst patients! Occupational Hazard!
    But boy it sure makes a big difference when you deal with doctors, lab results, and finally answers! Be your own advocate fellow friends!

  • Tamara Haag moderator author
    3 years ago

    Thanks so much for sharing your experience! I hope that the Vectra test will be used more frequently, as there seem to be so many seronegative people like ourselves who look “fine” with the standard blood tests used to diagnose RA. As you mention the tendency that many of us have to second-guess our symptoms, I thought you might find this article to be of interest: https://rheumatoidarthritis.net/living/second-guessing-my-symptoms-and-myself/. I hope that the Orencia is very effective for you. Please continue to reach out any time you have questions, concerns, or experiences you want to share. Thanks for being part of our community!

  • jbjb93
    3 years ago

    Thank you for sharing! My primary gave me the diagnosis and ran the blood work. I see the rheumatologist in two weeks after waiting three months to get in. Lab results are confusing and mixed. Glad to know this is normal! I don’t think my husband believes it’s RA. Been on prednisone since February and it helped. Still having a hard time at night.
    Thanks for all the info! Makes me feel better.

  • Tamara Haag moderator author
    3 years ago

    Yes, the diagnostic process can definitely be confusing! I’m glad that your wait for the rheumatologist is nearly over, and hope that s/he is able to find a treatment plan that works for you and brings you some relief. You may be interested in this article about what to expect at your first rheumatologist appointment: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/. Please know that we are here for you, so please reach out any time you have questions, concerns, or experiences you want to share. Wishing you all the best, Tamara

  • Kat
    3 years ago

    I am a believer in the Vectra test as well. I’ve had it twice, in the high 30’s to mid 40’s each time. I have never shown any swelling or redness, my only symptoms are pain and fatigue. My RF was high enough for a Dx but just barely. And my other tests sometimes come back normal. I feel Vectra most closely mirrors how I’m feeling and provides some objective proof. I wish it was more widely accepted as a standard but it seems to be gaining ground which I am glad of.

  • Tamara Haag moderator author
    3 years ago

    Hi Kat, Thanks so much for sharing your experience! Hopefully the Vectra test will continue to become more widely used.

  • pasparry1
    3 years ago

    This is exactly my experience over the last 10 years since I was diagnosed! Permanently seronegative. I too had the Vectra test but didn´t hold out any hope that it would indicate how ghastly I felt! It came back at 51 and my Rheumatologist was quite shocked. I was relieved, as was my husband because we then had something solid to work on and my Rheumatologist has been a lot more responsive to my severe chronic pain.

  • Tamara Haag moderator author
    3 years ago

    Hi Pat, thanks so much for sharing your experience! I’m sorry to hear that your rheumatologist didn’t take you as seriously until the Vectra, but I’m glad you are now getting the attention you deserve! Wishing you all the best, Tamara

  • Marcia Parker
    4 years ago

    My blood work on RA Factor and sed rate have always come back normal but my CRP has always been high.Between 45-68. My doctor did the Vecra test and it came back 70. Needless to say he was shocked. I’ve been with this Rheumy for little over a year. He questioner my pain early on but not any more. We can make them better doctors.

  • Tamara Haag moderator author
    4 years ago

    Hear, hear!

  • Lisa White
    4 years ago

    Hi Tamara. I’m so glad you ran this article. I, too, have been classified as sero-negative for many years. My primary care physician trained with a rheumatologist and he recognized the signs of RA and treated me clinically. He referred me to a rheumatologist whom he trusted and I’ve been with him since 2009. I’ve been on methotrexate and Plaquenil for years with no change. I’ve been on Enbrel, Humira and injectible Orencia with little to no change. Last year my rheumy told me about the VectraDA test and I was the first in his office to try it. I thought my numbers would be low–or even at 0–because all of these years of “good” numbers makes you believe you don’t really have RA or no one believes you. My VectraDA test came back 49–severe RA. My rheumy looked at me and said “I think you’re hurting more than we know”. He then immediately changed me to Orencia IV in July of 2014. I have seen a change, but my sed rate and CRP are all over the place and still having flares. That’s why they ran the VectraDA again last week and I’ll get the results April 28. The VectraDA test was around $900 and my insurance company would only pay $118 of it. I called Vectra and they are super people–great customer service. They said they would appeal to my insurance company for me, and if they weren’t successful, they would not bill me for the balance. To date I’ve not received a bill. I’m going to inquire if there’s an assistance program. RA patients, PLEASE talk to your doctor about the VectraDA test. It makes all the difference in the world when the doctor has the number right there in front of him and it takes the guesswork out of how he can treat your disease. Knowledge is power!

  • Tamara Haag moderator author
    4 years ago

    Wow Lisa, that is extremely helpful information! Thanks so much for sharing your experiences and for the tip about contacting Vectra.

  • Autoimmunitygirl
    4 years ago

    I have always believed that the lack of proper, and early diagnosis, for so many Autoimmune conditions AND there monitoring is a lack in the medical system NOT the patient. A good care giver listens and observes and patient history should be the MAIN guiding mechanism. The current system creates a culture of patient blaming and mistrust. Thank you for your sharing your truth! Gentle hugs

  • Tamara Haag moderator author
    4 years ago

    Thanks for sharing your perspective!

  • Davee Jones
    4 years ago

    I think there may be a type of financial assistance program for the Vectra DA test? At least my rheumy thought so.

  • Tamara Haag moderator author
    4 years ago

    Thanks for sharing that tip!

  • Davee Jones
    4 years ago

    I had high ANA levels, yet none of the other traditional lab tests concluded I had RA. My new rheumy asked me if I would consider the Vectra DA test because she suspected RA. I agreed and finally had proof on paper as well. It was almost a relief to get that result, I felt legitimate. I was a 37

  • Carla Kienast
    4 years ago

    Hi Tamara: Yeah, I’m one of those R-factor negative, all tests okay people too. That’s why I love rheumatologists who treat the patient, not the lab results. Although, being human, I’d like some scientific evidence to back up the subjective information about my condition. I will speak with my rheumy about this test in a couple of weeks and see what she says. Thanks for the post.

  • Tamara Haag moderator author
    4 years ago

    Glad it was potentially helpful info. 🙂

  • Chris Scherer
    4 years ago

    When I went for my first appointment to my rheumatologist, greeted me and started to tell me what he was going to do to examine me. Then he said “I can tell from looking at you that you have RA, but I will conduct my exam anyway!” Several times we have had conversations where he pronounced my numbers as “all good” and I then told him that it didn’t matter what the numbers said, I was having this or that problem. Thank goodness he is a smart enough man to listen and examine , too…not just have the tests run and go by the numbers! I understand being a scientist and going by the numbers, but physical evidence is important , too!.

  • Tamara Haag moderator author
    4 years ago

    Yes indeed, the physical evidence is important! I’m glad you have found a doctor who listens to you.

  • Linda Evans
    4 years ago

    Tamara, I would love to speak to you, I have the exact same problems you do, labs normal yet in pain, swollen on and on.I did have Vectra test and am also in moderate range, even with that my rheumatologist still only has me on prednisone,along with pain meds! This dispense can be frustrating when labs do not match pain and sick feelings. Sometimes I thought I was crazy,but the Vectra test did in a strange way make me feel better. Thank you for sharing your story.

  • Tamara Haag moderator author
    4 years ago

    Hi Linda, I’m glad you found my story helpful. Finding a good doctor can be really difficult, and in some areas there are such shortages of rheumatologists that there isn’t really much choice. However, if it’s feasible for you to get a second opinion, I urge you to do so. Prednisone and pain mess only treat the inflammation and pain that are already present, but there are many RA drugs on the market that decrease disease activity and reduce or eliminate symptoms before they occur. Long term that can mean far less joint deterioration. Good luck!

  • jan curtice
    4 years ago

    It is very encouraging to read/hear about others experiencing the same challenges that I do. It is also helpful to read/hear about solutions/choices they have made during their personal RA journey. Earlier this week, I shared with my rheumatologist a suggestion someone made and we are going to try it out, see if it helps me. So, thank you for this site! My guess is that you all are providing it through a lot of love, pain, and effort. The testing has been one of my challenges. My insurance wouldn’t pay for the meds or therapy. I was having a difficult time receiving benefits even though I clearly had reached a point I could no longer work. AND all this was based on numbers, not a physical exam. My doctors did an excellent job of documenting and my rheumatologist challenged the insurance company to send a field rep to come exam me. It took a total of about 2 minutes before he confirmed my doctors’ diagnoses.

  • Sharon Humphrey
    4 years ago

    Ok,that’s something I didn’t know could be done,having the insurance company send their own people to verify or confirm a need. My insurance is really giving us a hard time approving tests and treatment. They approved Medrol dose paks and pain meds after my doctor fought diligently to get me some relief of symptoms while I figure my way through this maze . I have been treated only by my primary physician for a few years because of the financial burden. I now have an HMO and was seen by a Rheumatologist, they both could use classes on humanity, so she ordered a barage of testing which I still can’t afford due to the amount of the co-pays. The HMO says the seriousness of my illness has to be medically proven for them to pay more towards it…well I need these expensive tests to prove it’s necessary, do you see where I’m going with this? I am beyond confused and before reading this today, had given up on going any further with treatment. It just seems like nobody listens. I have the elevated positive RA factor as well as MRImaging, I’ve been diagnosed for quite some time, I have visible, physical symptoms, I just need someone to hear me, see me, actually pay attention! ! Do I call the insurance company myself and ask for someone to come? Help!, The Invisible Woman.

  • Tamara Haag moderator author
    4 years ago

    I’m glad the site has been helpful for you. I’m sorry you’ve had such a frustrating journey (insurance companies drive me batty!), but I’m glad it worked out in the end. Good luck!

  • Kayla Calabro
    4 years ago

    Hi Tamara,

    This was so powerful to read because your experience mirrors my own (and I am a social worker too!). After years of seeing different doctors, and “normal” blood work, I was finally diagnosed with RA in 2012 based on a physical exam! It was SO frustrating to be told that there was nothing wrong with me, when clearly, I knew differently. My rheumatologist has been telling me about this new test for the last six months or so. However, I too am worried about whether or not my insurance will cover it. Since the results would likely do nothing to change my current treatment, I may just wait until my coverage is a bit better, which I expect will be in September when my insurance changes.

  • Davee Jones
    4 years ago

    You might check to see if there is a financial assistance program for the Vectra DA test. My rheumy mentioned something to me about it.

  • Tamara Haag moderator author
    4 years ago

    I’m glad you found this article helpful. It sounds like we have a lot in common! I’m sorry you had to deal with the whole “we can’t find anything wrong with you” scenario. I experienced that before my eventual diagnosis, and it’s so disheartening.

  • Wren moderator
    4 years ago

    Hi, Tamara! How frustrating it must be never, ever to see your test results reflect how you’re doing physically! I can understand why you were so pleasantly surprised when the Vectra test finally zeroed in on your particular case of rheumatoid disease.

    I think it’s fascinating how this disease differs among each of us in so many ways, and yet in the end it’s the same completely identifiable disease. I know there’ve been many times–most, in fact–when my CRP and sed-rate indicators show up as “normal” when I’ve been feeling anything but! And I know I’m not alone.

    Thanks for the interesting post, and for telling us about the Vectra test. I hope its use will become more widespread. Maybe it will help diagnose people who usually end up waiting for years for one, and spare them the “it’s all in your head” implication from friends, family, and sadly, their doctors.

  • Tamara Haag moderator author
    4 years ago

    Thanks for sharing your thoughts and experiences, Wren. Yes, just yesterday a coworker had a private conversation with me about my RA because she is being sent to a rheumatologist for a potential RA diagnosis, but her doctor delayed in that referral b/c her test results didn’t indicate RA. So yes, better tests used more frequently could improve the time it takes for many people to get an accurate diagnosis.

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