A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 3 | Rheumatoid Arthritis Warrior

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59 thoughts on “A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 3

  • October 17, 2011 at 6:47 am

    Newbie so forgive if naiive comments. At the moment, side effects worse aspect. Are secondary conditions and medically induced side effects considered in assessment tests? Boundaries blurry at times. eg infections due to methx, debilitating anxiety or depression.

  • October 17, 2011 at 10:55 am

    I had the Vectra DA test done in August 2011. Gratefully, my Rheumy was one of those that was already informed about the test. My disease activity level came back at 43, which is one mark below what is considered high disease activity on the test. At the time I was on MTX (20mg per week) as well as 50mg Enbrel (weekly injections). Not to mention the slew of other drugs (Cymbalta, Celebrex, etc). This test validated (for me at least) my RA diagnosis, which is SeroNegative. It also put to rest a lot of questions that my Rheumy and I had about my disease. I am now off of Enbrel, as it did not work for me at all. The MTX has been the only thing that I feel has helped my disease. We may switch to another Biologic in the future, but as if this writing, I am managing well with MTX and my other Rx drugs. I’m grateful that I got the Vectra DA test done and would advise anybody to seek it from their Rheumy.

  • October 17, 2011 at 10:55 am

    I am both excited and afraid to hear of this new test. Why? I am seronegative. Is this a blood test that may finally give “proof” of my RA without having to seek out a rheumy that does thorough physical exams? Or will it be just another expensive let down because, once again, I won’t have confirmation of the physical exam? I hate to get my hopes up that maybe a blood test will show the extent of my RA. Having been through this since the teen years, I am tired of the disappointment of even my sed rate being in the ‘normal’ range. My swollen fingers, ankles, and knees sure don’t feel or look normal.
    What is the cost of this test? Does anyone know if BCBS will cover the test?

  • October 17, 2011 at 11:39 am

    BCBS does NOT cover the test as of when I got mine done. The test was over $1,200. It is not meant to be “a confirmation of diagnosis” or a “diagnostic tool”….so they say.

    • October 17, 2011 at 12:27 pm

      Jerri, did you get help from their patient assistance program? They do not expect patients to pay that much if the insurance fails to pay.

  • October 17, 2011 at 11:46 am

    Although I rarely comment, I read all your posts and appreciate all the info you share. Thank you.

    • October 17, 2011 at 12:27 pm

      Thanks, Jan. It’s good to here from you.

  • October 17, 2011 at 5:22 pm

    You wrote of the importance of a patient’s estimation of disease activity. Lately, I’ve been in more pain than I’ve been in since diagnosis in April, yet I’m happy with the differences the medications have made in my life. Why? This morning, I vacuumed the living room rugs, wiped down the bathrooms, and put a pot of chili on to cook. After a rest of about an hour, made necessary because of the fatigue, I participated in a an hour-long, work-related weekly WebEx session for the first time in weeks. That necessitated another rest period, but this is the most “normal” I’ve been in months. I may not be jogging or kayaking or mountain biking, as I did just a year ago, but I’m not lying flat on the bed unable to contribute to our lives. My adult daughters report that I sound like me again. I can think again. So, although some doctors might decide that the increasing pain and stiffness shows a failure of the medications, what’s important to me personally has been returned at least to a small degree. How do I quantify “being me again”? Fortunately, I don’t have to. I’m one of the lucky ones with a rheumatologist who really listens.

    • October 18, 2011 at 10:27 am

      All good points Linda. The disease affects so many aspects of a person’s health. I’m glad you have a good doctor who communicates well with you and can help you to monitor disease activity – joints and otherwise.

  • October 17, 2011 at 6:23 pm

    $1,200??!!! Yikes.

    Has anyone contacted the patient assistance program about the cost if their insurance won’t cover the test?

    I’d be curious to know what the reduced price might be, or if there is a range in reduced price.

    • October 18, 2011 at 10:06 am

      Joie, before I published this piece, I did speak with someone at the company who created this test to verify that they have a good patient assistance program in place. I can’t say what the price is for any individual patient of course because these things are usually based in part on income and on what insurance pays.

  • October 17, 2011 at 11:17 pm

    I am also of two minds on this. Being seronegative, is this just one more blood test for me to fail? I am fortunate to now have a rhuematologist who says I am like one of the 15 to 20% who are never RF positive and blood inflammatory markers are not as helpful as clinical observation or patient function.

    I am very fortunate that the MTX seems to be really working well for me. A good number of my joints feels almost normal again. Some of this I’m sure is due to my current prednisone taper. But I can snap my fingers for the first time in over two years – it’s amazing – I really didn’t realize how bad it really had gotten until it started to get better. I am not where I was before but, good lord, this is so much better. I would not want to go back. I would hate to think this could stop working.

    • October 18, 2011 at 9:39 am

      Leslie, I hope it doesn’t stop working for you, either. Recently, I contracted an illness that had sent two neighbors to the hospital with pneumonia. I had to come off the Enbrel until my fever was gone, and I was more afraid of coming off the Enbrel than I was of the consequences of the illness. This, from a person who chose to be vegan when my cholesterol started creeping up, prefering to revamp my whole way of eating to bring my cholesterol down (to 147!) rather than take a medication. A year ago, if you’d told me that I was going to look forward to every “shot day,” I wouldn’t have believed you, not because I’m afraid of needles but because I loathed taking any medication.

    • October 18, 2011 at 10:22 am

      Leslie, if the treatment that you’re using is helping and you and your docs have a good idea of your disease activity, then this is probably not what you need right now anyway – but more options are definitely better since there have been so few available for RA patients. Early on in this blog (over 2 yrs ago, I reported on studies that show about 1/3 of RA patients are Rf negative). It actually made a lot of people say I was “defending” those patients because my own Rf was negative. It’s not. But I’ve been through the same kind of “prejudice” from uninformed doctors because of having subtle swelling and a natural tendency toward low CRP – again: a group of as many as 40% of RA patients. The message that people can be Rf negative and still have Rheumatoid disease activity still needs to be told since some doctors were trained when it was believed/taught that Rf is “THE” measure of disease activity. However… younger docs were trained that the CRP is “THE” measure of rheumatoid disease activity / inflammation today. That’s wrong, obviously… but for the doctors who were trained that they MUST use some kind of objective test, it will be useful to offer them broader ones that may (hopefully) reflect a broader range of disease activity. It’s too soon to judge the exact use of value of this test in practice, but it’s an encouraging step. As I wrote in the series, a 3-pronged approach to the paradigm shift for RA care is needed. Objective tests that are more broad and accurate will make up only one of those arms.

      • October 19, 2011 at 7:54 am

        Your comments are interesting. When I was seeing my first rheumatologist, his view was, no positive Rf, no RA – just that simple. My current rheumy discounts all of the bloodwork as being “unenlightening”. It may have to do with training, there was a large age difference between the two, but I have to wonder if the training is even that good everywhere. My daughter, just 37, was recently diagnosed with RA and the rheumy said “it always starts in the hands”. This from a young woman whose traing should be up to date! We all know how untrue that statement is. It doesn’t take much research to discover that RA can be Rf negative and doesn’t always start in the hands.

        I can understand the desire to have an objective test to verify the clinical diagnosis. But I think this is a complex disease that is little understood. Perhaps this test will provide the proof that is needed for those who don’t trust their clinical observations or whose clinical observations are less than stellar. Although they have made it clear that the test is not for diagnosis.

  • October 18, 2011 at 9:53 am

    my rheummy who I went to has been doing this test for the past year and half, my insurance covers it, i never got a bill for it. I have standing orders for blood work every 6-8 weeks, so I’m able to see what labs he orders.
    Great post Kelly, love your blogs, they are very helpful

    • October 18, 2011 at 10:01 am

      Thanks, Vickie. I’d love to hear more about how your doc uses it in your care, as time goes on. Thanks again for posting. We are living, step by step the progress we need to see – bit by bit. It’s very encouraging.

  • October 19, 2011 at 8:48 am

    My rheumatologist had never heard of this test and said it couldn’t possibly be very “mainstream.” However, he was somewhat open minded and went through the process to order the test for me. I am waiting on the edge of my seat (well, figuratively anyway) to see what the results are.

    I am seronegative, and my (new) rheumatologist has been hesitant to do much in the way of meds until he can confirm my diagnosis. His best idea was to take me off the Enbril and see if I flared, an experiment I was not keen to try.

    My hopes with the results of the Vectra test are first to confirm the disease activity level, as well as see if there is a different biologic that will work better than the Enbril — it helps some, but I am definitely not under control.

    As far as the cost of the test, I completed paperwork regarding my family size and income, and whatever my insurance doesn’t pay, the company that makes Vectra subsidizes on a very generous sliding scale. I would call them and talk to them about it. Obviously, its a marketing tool for them, but it helps us, so its worth it to find out more about it.

    • October 27, 2011 at 7:24 am

      Well, I received my Vectra test results back, and I am still in the same seronegative, no diagnosis boat I was in before the test.

      I had hoped that the test would show some disease activity at one or more biomarkers not normally tested, so that I could see if the biologic I was on was the most optimal.

      My score was a 24, at the low end of disease activity, and most of the biomarkers were WNL. I have yet to see a copy, so I would want to, of course, so I can look at which biomarkers were high. It could mean two things: the Enbril is “keeping the disease under control”, to which my gut reaction is,”Really, this is as good as it’s going to get?”, or that I don’t have RA and the fibromyaglia is causing all of my woes.

      And my new rheumatologist still has the same position as before I requested the test. He will not diagnose me with RA until he sees the swelling for himself, so he wants me to go off the Enbril for 1 – 3 months to see what will happen.

      I have some real concerns about this. The weather changed this week, and the cold has made me much stiffer than during the summer. I can’t get my hands to work properly, I am limping more and having more painful joints. I still take pain medication every day to get through everything I have to do. I have children, I work. How am I supposed to get everything done if I get as sick as I was before I was on the Enbril? Could I really have been that sick / swollen / had such a strong response to pred if I don’t have RA, just Fibro? Why would I have improved so much on the Enbril (even though I’m not feeling 100%, even 50% on the Enbril) if I don’t have RA? My husband is supposed to ship out for 5 – 6 months by the end of December. I only have him, no other family that will help. I am really worried about what will happen to us.

      I read about Brandy’s frustration, and also her questions.

      Some of my other friends with RA are telling me that I need to get a third opinion, and that I should not stop taking the Enbril. Before my first rheumatologist fired me, I had started MTX with the Enbril in hopes of getting a better response. I was only on the MTX for four weeks, and the side effects were awful, but I want to try that combination again to see if it helps. The new Rheumatologist won’t try it until he has a firm diagnosis, which means stopping the Enbril. I’ve also read (I’m sorry, I don’t remember if it was on RA Warrior or on another site), that you have decreased response to each successive biologic. Is that true if you start the same biologic you had been on before.

      I don’t know, it just doesn’t make sense to me. Do I need to have an official label in order to get the medical care I think is appropriate?

      • October 27, 2011 at 8:51 am

        If you read it here, it was that each successive biologic has a lower *chance* of working – it’s a percentage thing. I’m looking for the link to put here.

        Anyway, I agree that the doc should let you have a copy. It would be more useful to see each marker result instead of just a general score that the doc is giving you. We need better tools, but there are other ways to look at disease activity – there are some radiologic tools that help him get a clearer picture IF you can get an expert technician (such as musculoskelatal ultrasound, nuclear bone scan, or mri of a joint).

        I’m sorry you are going through the unceertainty at the same time as the illness. For what it’s worth, another opinion does sound reasonable. I’ve heard from many patients that had more than 2 doctors before they got a clear diagnosis. Rheum docs practice by different philosophies and protocols – that’s why the 1st one gave you enbrel & the second 1 won’t give you a dx.

        Many of us have been there. I feel bad for you. Going off meds can make symptoms more “obvious” such as swelling, and your family counts on you.

        Speaking in general terms about Enbrel or other biologics, I have read that if you go off of them, it is more likely that you can develop antibodies against them. That is the reason sometimes they don’t work as well when a person goes back on the same one. I’ve also been told recently by 1 investigator that he saw it work the other way – a patient went back on a treatment after a long time and the second time, it did work. The immune system is extremely complex – that’s an understatement.

        • October 27, 2011 at 12:02 pm

          Hi Madi, we both got the same score. Crazy! I’ve got a call into my rheumy to ask if someone off the street could get the same score. Then at least it would be confirmation of the disease, albeit at a low level. This could be tricky because my rheumy is a little bipolar and could get very snitty about answering ‘ridiculous’ questions. I guess I’m lucky because he is certain I have RA. I’m the one who wants numbers..
          I feel for you Madi. I’m in the same boat… wondering if this is as good as it’s going to get. I told my husband this morning that I’m done with RA and FM. Despite my proclamation I seem to be aching as much as ever. It seems my disease listens about as well as my husband!

          • October 27, 2011 at 1:00 pm

            I know it is a different topic so I hesitated to mention it earlier to Madi’s comment – but only about 20% of RA patients get the 70% improvement in the commercials. And at least 1/3 of us don’t have a response. The rest are in the middle. So, about 44% get about 50% improvement – and that’s “as good as it gets” as Madi said, UNTIL there is a better treatment or more research shows us how to stop this disease – I hate to say it over and over but that is why its so important that we join together with the new foundation to specifically promote RA research.. and show the world how much is still needed for this disease

  • October 19, 2011 at 11:52 am

    Thanks for sharing your experience. I poked around the Vectra website and was pleased to see that it does show disease activity for those who are seronegative with the traditional tests. My employer is looking at changing insurance carriers for January, so I’ll cross my fingers. Because I don’t have high CRP levels, it would be nice if this test could show the level of disease activity for me. Sometimes I feel as though my pain levels and inflammation are not taken as seriously because my blood tests have always been in normal ranges. In 25 years of dealing with this, the only blood test that has been out of normal ranges is my Vit. D. I am grateful that my rheumy goes by clinical exam, but I fear that my RA is worse than it appears because my flares get worse each time. My last flare was 6 months long and more joints were affected at once than I’ve had before. Granted, I turned 40 this year, but give a girl a break. lol

  • October 21, 2011 at 7:05 am

    Rather shocking to hear of rheumatologists who think you can’t have RA if you’re RF negative. I’ve been lucky enough to never run into that, perhaps because of having a “classic” presentation otherwise (wrist & MCP involvment, x-ray changes, high CRP & ESR, all the textbook stuff).
    Never considered that there was an upside to that ’til I read this post!

  • October 23, 2011 at 8:00 am

    Given the markers they use, I wonder if it could be used to help select biologics or track the results of specific drugs. They are testing TNF, IL6 and several others markers that the biologics target. If I could have avoided the pain and expense of failed biologics…. plus what to do with a fridge full of syringes I can’t use but cost me several hundred dollars apiece!!

  • October 26, 2011 at 9:22 pm

    I just had this test done and got a score of 24 which puts me in the top of the low category. I am frustrated because, while I am certainly not at my worst, my hands and feet continue to ache and swell. I am sero negative so I was certainly hoping for what we ( the seronegs) want….. VALIDATION! My rheumy is satisfied now with my treatment.. Orencia and mtx, and is content to blame everything on my fibro. Sigh.

    Can anyone tell me if a non-ra person could also receive a score of 24? I know this “does not confirm a diagnosis”, but could a person without RA get any kind of score?

    • October 26, 2011 at 10:03 pm

      Brandy, I’ll have to learn more about it before I can offer an opinion on that value. But I can say – –
      1- you are right about the need for validation – it should not work this way, but I know just what you mean and I think I know how you feel right now.
      2- of course a good rheum doc should not practice by any test at all in a vacuum and hopefully yours won’t. Especially true if the tests do not validate what the patient experience is – when all tests fail, a person can still have active and damaging RA – I’ve seen it in patients too many times – When there is “conflict” like this, a good doc keeps looking and listening. Listening to you and looking for any signs of damage.

      You might want to read the guest blog by David – here: http://www.rawarrior.com/excellent-rheumatology-care-with-a-horrible-rheumatoid-disease/ David’s doc looks for ways to confirm his disease activity and treat it – even though it is is challenging that his particular RA does not show up on the tests we have today – they have sent him to radiologists who have been able to confirm what David knows by his symptoms – that the RA is active and dangerous.

    • October 26, 2011 at 10:09 pm

      Maybe someone who’s had the test will reply with an opinion. But I still think it needs to be in context of how you feel & finding out why. Not excusing it as fms.

  • October 27, 2011 at 2:36 pm

    Well I got a response from my rheumy. He said it’s a good question (yay! At least that’s something) but he has no answer. They are still studying what the results of this test mean.
    So back to my normal life. Pain, swelling, fatigue, not being able to do the things I love to do. I know i am lucky to have doctors who are certain of my diagnosis, and because my neck has tons of damage, I have a wonderful pain mngmt doctor. I just get tired of throwing narcotics at a problem there are no numbers to support. So I’ve gone from being very active and a runner, to being a person that prays for abnormal blood tests! It’s hard to believe this is my life!
    More and more I believe God is asking me to stop relying on numbers and “proof”… I am that kind of girl. I’ve got to learn to listen to the things that can’t be measured.
    Kelly thank you for this site. God bless you!

    • October 27, 2011 at 3:12 pm

      Thanks Brandy. I hate to hear that normal life is all that. I know…
      Even more important than having numbers to confirm the need for meds is *knowing* whether the meds are helping control the damage in your neck especially – that’s what David was dealing with in the example I mentioned above. His doctor wants to keep looking in order to find out if they can help preserve his cervical spine’s integrity – So x-rays only show further damage after the fact. Glad that you have a doc who is not fixated on the numbers, like you said. What’s happening in your neck is so much more important…

  • May 22, 2012 at 3:49 pm

    My doctor just ordered this test when she put me on Orencia two weeks ago. Have not yet gotten the results.

  • August 5, 2012 at 12:05 pm

    After receiving results of the Vectra DA test this week, I was curious what others were saying about their results, so, of course, I searched the RA Warrior website for information. (Thank you, Kelly, for providing this amazing resource.)

    Like others, my Vectra score was low.

    Quick note about my RAD status: Diagnosed 2 1/2 yrs ago as seropositive; 6 mos. later, diagnosed as seronegative by a new rheum dr. Since then, no traditional chemistry markers have disclosed disease activity, except for anemia. (But my rheumatologist never denied reality of RAD.) My symptoms marched on: Failed MTX monotherapy, and failed additions of Embrel, then Humira.

    Thankfully, after the past 4+ mos on Orencia + MTX, I recently began to see better days, and I’m truly, truly thankful for every good day. But I still have some difficult days, with joint pain, some swelling and redness, plus severe weakness.

    So I asked my rheum dr: “Is this as good as it gets?” His response: Reality is 20-50% improvement is basically today’s normal with the medications we have available, even though patients are seeking better results; 70% improvement is actually rare, and remission even rarer.

    Before my test results were delivered, my rheum dr said if my Vectra DA results were low, then it likely meant low joint disease and I should continue my current medication. He also said he would then believe that my joint pain is due to neuropathy.

    He previously has strongly encouraged antidepressant meds for neuropahy, but I can’t tolerate them.

    Any thoughts about my joint pain and fatigue/weakness being caused by neuropathy now instead of RAD joint activity / disease progression?

    Please note that I’m experiencing severe brain fog today (MTX hangover) also with much fatigue, so I hope this post makes sense.

    Thanks in advance for any comments/ insight.

    • July 20, 2015 at 11:36 am

      Totally get what you said! I am new to this but already feel like if they don’t ‘see’ something then you’re OK . . . what about the unseen symptoms, right?

  • August 12, 2013 at 2:44 pm

    My exams usually consist of the Dr looking at my hands and asking if I can make a fist, never mind about the fatigue or the pain in my feet,knees,ankles,wrists and back. It frustrating to be told how much better I am doing when I know that is not so

  • October 17, 2013 at 10:09 am

    As with so much pertaining to RD, the Vectra DA test may not be for everyone, however it was a Godsend for me. For 4 years I was bounced from one TNF blocker to another because none of them worked. This test determined I needed an IL-6 Inhibitor rather than a TNF blocker.
    I have been on Actemra for 10 months now and feel so much better. No flares at all and i’ve weaned down to 1 mg of Prednisone. Hope to be completely off within a month. This is not to say it works for everyone, but I am pleased with the results.
    Thank you always, Kelly, for your wonderful posts. I have learned so much from you and am very grateful.
    God Bless,

  • May 28, 2014 at 3:37 pm

    May I vent? My doctor ordered this test for me. I’ve yet to hear the results but the bill for this one test alone was $989.00 (!) of which my insurance paid some leaving me with a bill for $666.84(!!). When I had said OK to a “new blood test” I had no idea. So I’m miffed that my doctor failed to run this by my insurance first.

    Also, as far as I can tell this test will only provide suspicious doctors with the “objective data” that they’ve always looked for. It will be of benefit to me only if the doctor hadn’t believed my “subjective” reports of disease

    A better solution for a suspicious doctor– one who thinks you lie or exaggerate– is to find a new doctor.

    • May 28, 2014 at 10:03 pm

      Sorry about the above– it’s a little too harsh. I’ll try to keep an open mind about Vectra DA. I’ve just had too many experiences when I’ve felt that I’m fighting a doctor’s disbelief or misunderstanding(it’s hard enough to fight RA). Perhaps I’ve developed some practitioner anti-bodies– just kidding. Ultimately, I may not even be stuck with the bill.

  • October 28, 2014 at 7:27 pm

    My first initial Vectra test was after 4 years of methotrexate and Plaquenil therapy. The numbers revealed a low to moderate activity level. Within weeks my neurologist pinpointed longstanding damage in my cervical spine that required immediate surgery and fusion, C5-C7. Another Vectra test, one year later, just revealed moderate to high levels of RA activity and I finally have both biomarkers for a solid diagnosis! That only took 5 years, 1 serious surgery, and unnecessary pain and erosion in every joint of my body. Without the advice and insight of the RA Warrior, I would begin to doubt my sanity. You taught me the patient experience matters!

  • November 1, 2014 at 6:59 pm

    I guess I can say I have been fortunate in my first test for RA came back positive. I was first put on MTX which caused blood in my stools with 1 month. Taken off, I was put on Humira, then Orencia and am now going on Actera. My RA Vector test came back with Severe, agressive with no response to any of the drugs. BUMMER! I am in so much pain and only 58. My twin sister is about 1 year behind me in symtoms. Thanks Dad!Someone help me…

  • December 11, 2014 at 2:47 pm

    Seronegative RA person and just had the Vectra-DA done. So far, with the exception of a very low positive ANA last year which later was negative all of my labs ( RF, Anti-CCP, sed rate, C-RP and other immunogliobulin tests) have been negative and no anemia. However, I have joint pains in many joints, minimal swelling by doctor standard but I know they are swollen, horrible fatigue, joints moving out of normal alignment, and impaired mobility. DX by 3 phase bone scan but when you go in for evaluation for effectiveness of treatment it becomes gray again at least to the providers. So, I was game for this newer test. Low and behold, the score came back with moderate disease activity, 30 lower end, at my 9 weeks of initial methotrexate and low dose prednisone. I’ve been telling my spouse that I feel about 65% better since starting meds which is great at only 9 weeks! This validated for me at least that what I’m still feeling is real. So, I wonder since this test is still fairly new that perhaps the ranges of remission less than 25, low activity 26-29, moderate activity 30-44, and high activity 44> still need tweaking? After reading some of the above posts many folks are on treatment but still are symptomatic with very low to remission disease activity scores or could it be that these folks fall into the category of this is as good as it gets for that person 20-50% improvement?
    After reading case studies with this test, it does provide a way to gauge treatment effectiveness in some patients. So it’s a big step in the right direction, but there’s nothing about this disease that makes it fit perfectly into a hole with regard to presentation, progression, or response to treatment.

  • March 2, 2015 at 1:10 pm

    Browsing through the site I can see that there are a lot of folks who need to change doctors! If the Dr won’t listen then find one who will! Yea it’s a pain and sometimes an insurance nightmare but in the end it’s well worth it! Now back on topic. I’m awaiting the results of my 2nd Vectra DA. 1st one had me at 45 on Orencia and Arava. Now on Humira and Arava pain and swelling are down but the fatigue is the same 🙁
    This is the 4th or 5th combination of RA meds. Stopped MTX because I’d loose a day every time I took it (nauseous and 0 energy the day after I took it)so I’ve been on Arava since 2011. was on Cimzia for a few years and it stopped working, then Orencia which didn’t seem to do anything, now on Humira which seems to be working (at least on the pain and swelling) (Fingers crossed).

  • July 14, 2015 at 6:37 pm

    Hi All,

    I think I have this.
    One of 11 children, number 10. It,s in right knee, hip, elbow, wrist and my right hand keeps going into a claw. Waiting on the results of xrays but it is genetic from parents and brothers and sisters. I cant do what I need to, been in total despair this past week. I cant drive, but I have to for my job.
    I am in desperate need of some support!

  • July 15, 2015 at 5:51 pm

    I have seronegative RA, and the only blood work that was out of whack was my Vitamin D. I’m on 400 mg plaquenil, 1 mg folic acid days a week and 15mg MTX once a week. My Vectra DA came back very low – 14. So lab-wise, I’m negative across the board (all my blood work was prior to any meds). However, according my x-rays and MRI, I definitely have RA, and according to my ultrasound, I was showing bone erosion only 4 months after being diagnosed. After reviewing the ultra sound, my rheumy said the RA is more aggressive than she thought and that’s when she added the MTX. Every day I’m a little worse and I can see changes in my hands and body. The point to my post is that sometimes it doesn’t matter what our blood work says. You can be like me and have no lab results to confirm the diagnosis but still have an active disease.

  • October 19, 2015 at 10:54 pm

    I just got back from my second visit to a new Rheumy. I am seronegative but have a lovely nuclear bone scan that shows lots of “modification” happening in my bones. Over two years ago I saw a Rheumatologist who spent the whole visit telling me I was too fat, probably did not have RA, and if I just lost weight I would feel better. (Her very first words to me, as a new patient: “You weigh nnn pounds, that’s too much.” She never did say hello or introduce herself.)

    Lo and behold, though, she dx’d me with RA in the end. (This was right after the bone scan.) I never went back to her, but my primary care kept prescribing low dose methotrexate as I searched for another doc.

    My town has not nearly enough R. docs–months to wait to get an appointment, or to be told, as I have been by four so far, that they won’t give me an appointment because I am “not sick enough,” or they “don’t think they can help me.”

    In the end, I went to a doc who has mediocre reviews online, but has turned out pretty good for me. He started with the same reluctance: thought maybe it was osteoarthritis (in my whole body? really? [I have tons of crepitation.]) but promised not to take away the mtx as it was really helping, and even agreed to give me injectible, which I desperately wanted to help my poor stomach. He also took buckets of blood for various tests including Vectra. That was visit one.

    Today was visit two. I have a Vectra-da score of 49-decidedly into the high activity range. Also, for the first time, a decidedly high CRP. No more talk of osteoarthritis, or fibromyalgia (my original diagnosis for a decade). Just straight on, “You have RA.” Wow. Talk about validation.

    I’m dealing with the emotional fallout now. It’s not as bad as the original RA diagnosis that came with the bone scan. That was a total validation meltdown covered in tears. This one is more a realization that I have been secretly downplaying the RA to myself. “Maybe it’s mild RA.” “Maybe it’s not *real* RA” the secret voice whispers. “Maybe I really don’t have it.” But I do. (I have bone pain and fatigue and crepitation but not much in the way of visible changes.)

    So I rate the Vectra test a real godsend, because now I have a Rheumy willing to pull out all the stops on real treatment. With a treatment plan. And everything! My biggest terror is heart disease. This puts me in a better position to work on that. I know this post is much later than the others, but I wanted other seronegs to know that Vectra can help.

  • October 28, 2015 at 4:23 pm

    So got my Vectra results back today. I am seronegative also, but my vectra resilt was 51 which puts me in the high level of RA activity. My next appt is in 2 weeks and I am slightly hopeful that with this result we can start something that maybe will work. I took Enbrel last year it helped for 4 months then stopped working, then I was put on Simponi which did nothing and made me feel awful. In fact the only time I have felt well was when I did a recent prednisone taper. I hope this will be the “proof” that I need for some reason guess the pain, swelling, fatigue are all in my imagination

  • November 22, 2015 at 7:46 pm

    I’m new here and read through the post. I’m confused by a post and wanted to ask a question. If a Vactra da comes back low score, does that mean you don’t have Ra.

    • November 22, 2015 at 8:10 pm

      Hi Cindy, NO! It would not mean that. There is not a definitive blood test to show whether you do or don’t have RA/ RD. The most definitive is the anti-ccp test, but some people with rheumatoid disease have a negative result on that test – at least at first.
      Here’s the list of articles tagged blood tests in case you want to read more about that: http://www.rawarrior.com/tag/blood-test-for-ra-rheumatoid-disease/

      • November 23, 2015 at 11:35 am

        Hi and thank you so much, I got my result and it was 24, low but i have such issues with my joints, flare offten with painful knees, red swollen and warm, feet and toes and heels, fingers wrist . i was shocked to see a low result i have so much pain when flared. thank you for your time and quick response.

  • January 15, 2016 at 5:38 pm

    Kelly, now that Vectra has been out on the market for longer, do you have any thoughts about how reliable it is for assessing disease activity?

    I’ve always had normal blood markers, and my first Vectra score a month ago was pretty low (in the teens). I’m feeling tons better than I was a year and a half ago when I was first diagnosed, but I still have some pain and worry about long-term damage to my joints or heart if there’s disease activity we can’t see. My rheum recently diagnosed me with fibromyalgia and started me on Cymbalta, since she thinks the RA is pretty controlled now, so I’m trying to decide if this is my new “baseline” or if I should push for something better.

  • January 19, 2016 at 3:33 pm

    First Vectra test after being CONFIRMED with Rheumatoid Arthritis. Score came back 51. The “I told you I was sick” moment was glorious.. (I’ve only tested positive for RF factor once in 10 years.) Started Remicade soon thereafter. Tried, and I mean REALLY tried, but after blowing a vein EVERY time, having to push my infusions from the suggested 2 hours to 3.5 hours in dosing time, not to mention the minimal relief from pain vs a laundry list of side effects… I stopped Remicade after 6 months. Calling it a Fail. Interesting enough, my last Vectra test was done when I was already 5 months into treatment with Remicade. My score was 56! So this confirms that I knew things weren’t right with the treatment I was receiving. I’m starting Orencia as soon as my insurance company decides that my Dr. really does know what he’s doing by prescribing it to me.

    My opinion is the Vectra seems to correlate my own pain and symptoms that I’m still in HIGH disease activity.

    For what it is worth – and all that…I think it is a good tool for personal tracking – and might be critical information to have down the road if/when my disease renders me unable to work at all.

  • February 11, 2016 at 12:52 pm

    Am not sure how to take this test. I, like many of you, have had normal CRP, ESR, CBC, etc yet have obvious swelling, joint pain, fatigue. have had + RF and now is negative by another Rheumy. had earlier xrays showing early signs of joint damage but my new Rheumy and recent xrays show none. I’ve bounced through all the meds–MTX, Enbrel, Humira, Cimzia, Orencia, Remicade and the slew of add-ons from antidepressants to Plaquenil–and have “settled” for now on Xeljanz, Arava, prednisone daily and every antiinflammatory herb and supplement I can find. I continue to have swelling off and on, fatigue that seems to be constant, and stiffness that seems to take forever to resolve. I get worse–much worse–at least once a month. I relocated to a new area and, once again, have to break-in a new Rheumy. He did the Vectra DA–came back with a score of 20–and now says I do not have active disease. My joints say otherwise. My question is if I’m seronegative for every other test, what is the chance I will be seroneg for this as well? do people without RA score on this and what is their “norm”? I would not consider myself in remission by any means, but by my bloodwork I am. frustrated in TN!!

  • February 12, 2016 at 4:17 pm

    I was initially diagnosed with Polymyalgia Rheumatica four years ago. I took prednisone for three years tapering as rapidly as I could. I tried methotrexate for six months and then again later for five months, but my hair was falling out all over the house and I felt almost catatonic for two days after each injection. I stopped all medication for seven months and had the Vectra DA test with a score of 27. I like many did not know what to think since I felt terrible, had visible swelling of one of my ankles and some of my fingers and was in constant pain. Since then I have read a number of scholarly articles and studies on the biomarkers that make up this test. All are implicated in rheumatoid disease. Different people have different elevations of these various biomarkers which in my mind is in agreement with how differently RD affects everyone who has it. A study in the journal Rheumatology 2003; 42:83-88, “Serum MMP-3 and MMP-1 and Progression of Joint Damage in Early Rheumatoid Arthritis” by Green, Gough et al., compared expression of these two matrix metalloproteinases in people who had early untreated RA with others who had no disease at all and found that “baseline serum MMP-1 and MMP-3 levels correlate with disease activity and predict functional and radiographic outcome in early untreated RA. Serum levels may be particularly helpful in situations where traditional markers are less accurate (e.g. patients with a normal CRP and who have non-erosive disease at presentation),” and further, “As in previous studies, the present results demonstrate that the serum levels of MMP-3 and MMP-1 were greater in RA patients compared with normal controls.” Studies of the other biomarkers have proven much the same thing. In my case, I have elevations of MMP-1, VCAM-1, YKL-40 and Resistin. Other markers are very low or not very high. For instance my Interleukin 6 is only at 29% whereas some people have a very high measure of that cytokine. What does it mean? I have no idea, but I suspect that it means that I have some form of Rheumatoid Disease and enough disease activity to make me feel really awful every day. Those of us who are sero-negative and have a low Vectra DA score are confused that we can feel so terrible and yet have tests that do not show any significant disease. Naturally, we want validation and proof. For me, reading about the significance of the different biomarkers measured in the Vectra test was some kind of assurance to my untrained mind that I am as sick as I feel. I will be interested to see how the results of future tests reflect my symptoms. In the face of doctors who are dismissive of our complaints, all we can do is educate ourselves as best we can and keep searching for doctora who will listen and take us seriously.

  • February 28, 2016 at 6:46 am

    I have been living with RA for 5 years now and this year have felt it affecting more areas like tendons as well as joints so I started searching to see if this pain was related in anyway. This can be such s frustrating disease to live with some days. Love your site it is aleays full of very helpful information.

  • June 14, 2016 at 8:31 pm

    Hello everyone…I know this is a new post on an older blog but I thought my 2 cents might help. I was just recently diagnosed with seroneg RA. I have had ESR’s around 40 and my last crp was 11. RF and CCP have always been negative. I was originally diagnosed with systemic JRA at age 5 and have had varying degrees of joint pain and stiffness ever since. I stopped going to a rheumatologist once I was 18. I am now 43 and finally revisited this whole autoimmune extravaganza! I’ve been very symptomatic for the last 4 – 5 years but never took it too seriously. I just lived on ibuprofen and told myself it wasn’t a big deal. Bad, I know! And the worst part: I’m a nurse! We do make the worst patients!! Anyway, a month ago I finally saw a rheumy who diagnosed me that day due to inflammatory markers being elevated, pain, stiffness and swollen hands, fingers, ankles and feet. He ordered the Vectra DA. My score is 45. I feel that accurately reflects how I’ve been feeling. Currently, I’m on Mobic and plaquenil. I haven’t discussed Vectra DA results with him yet…after next appointment I expect medication changes. We’ll see… In the future, I think the Vectra DA test will prove to be indispensable in the diagnosis and monitoring of RA.

  • June 22, 2016 at 7:14 pm

    I had the Vectra da test done. It was very helpful in helping my Rheumie and I choose my next medicine. I had failed 3 TNF inhibitors and we were unsure what to try next. The Vectra DA test showed that I scored very high in IL-6 so we decided to try Actemra, the only IL-6 inhibitor. I’ve had more relief from this so far than all the other biologics.

  • October 13, 2016 at 8:58 pm

    So, unlike most of you, I was fairly asymptomatic when my doctor tested me initially for Lupus because they thought my brother had it. I’m a physical therapist, so my job can be physically demanding at times. I’ve always attributed any joint pain to more typing, or manual therapy, or lifting than normal. Turns out my Vector DA test showed high activity. I’ve been on Plaquinel with no obvious change, and now my rheumy wants to put me on some sulfa drug. I do fatigue during the day, but am still able to carry out my duties. I’m wondering about long term effects of having a high inflammation score and not taking meds. Any thoughts on this? I work in a hospital and can’t afford to be immunocompromised. Also, planning to start a family in the next year, so I can’t be on most of the meds anyway. Any input is appreciated.

    • October 15, 2016 at 2:51 pm

      Hi Michelle. Those are good questions. Pregnancy often offers remission, so your inflammation may be relieved for a while. Also, some of the meds are being tested with pregnancies. I’ll put a link here for you to follow up on that. Obviously some meds are unsafe for pregnancy, but you can talk with your doctor and do research and decide whether to start with medication or delay that until after you have your baby.
      No one can know for certain at this point what damage is done with long-term high inflammation, but it is likely there. And unfortunately if you joints are not very inflamed, then the disease activity could be elsewhere. I hope you have a good GP and follow up on any symptoms you notice. Good luck.

  • September 22, 2017 at 12:38 pm

    Dear Everyone,
    I too. am seronegative, but have had hand swelling and feet swelling for years. But I happen to be one of those crazy people that kept thinking the Doc must be wrong about me having RA. It seems that most people talk about horrible pain. I just ache when it is active and mornings are very stiff. I have had high CRP and sed-rate test. I have had 3 Vectra Blood test and each one was higher than the next. First one 51 and last 61. My doctor told me that my Vectra was going higher and the regular blood tests were staying the same.She wanted to know if I had all my yearly tests. She said time they have seen this test keep going higher and the patients ends up with Cancer or another disease. Scared the heck out of me. She did a sonogram of my wrist . To compare to lasts years. Haven’t heard a thing but have worried for 2 months that I have an incurable disease. I am taking and infusion of Rituxin and taking plaquelnil and Arava. I have had every infusion you can have and most haven’t worked for me. Humira was the best but now that I am retired Medicare only pays for office shots or infusions. Humira doesn’t make and infusion. So honestly I don’t want to take any more infusions. They all scare me.
    Stephanie M.

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