RA or not RA?

One of my favorite summer shows is about a concierge doctor in the Hamptons, New York. In one episode, a patient spends his entire adult life with a MS diagnosis, he even starts a foundation with the tagline “you are not your disease.” He meets the main character who notices some red-flags, runs new blood tests and finds out that in fact, this man does not have MS but Lyme disease…

Lack of supportive bloodwork for RA

I have sero-negative Rheumatoid Arthritis. I have the clinical symptoms of RA (swelling, joint pain, stiffness, and others) without the blood work to support them. I have beautiful blood. It is generally hearty and vibrant with the exception of some fluctuating white blood cells. I drink loads of water before every draw so I may not know my true sanguine nature. I do however want to feel better about getting stuck with needles so I do compliment my hemoglobin!

I’m not sure exactly how I feel about healthy blood work. Every time I go to a doctor they check my blood and discuss my diagnosis. They ask me how I’m feeling, what symptoms I have and through a process of elimination always come back to RA. There are a lot of unanswerable questions like:

“Do I have RA???”

I am exposed to animals so I am consistently tested for Lyme and other titers, all of which come back negative. We discuss different autoimmune conditions as symptoms arise and always cycle back. Why?

I wish I could tell you.

I don’t experience too much swelling, even during bad flares. I don’t have any joint deterioration (yet, at least). I don’t even get fevers often – the telltale sign of an active immune system- or “normie” sick.

Doesn’t sound right, does it?

Here’s what does. I have joint pain; stiffness and my darling hinges lock up towards the end of the day. I do get some noticeable inflammation in my fingers and toes and I respond to medication. Sure, I am on some blanket autoimmune ones like Methotrexate, Prednisone and Tramadol but I do well with specific biologics like Orencia. I feel like this class of medication wouldn’t be effective if I didn’t have RA, right? Possibly but, a lot of these biologics are effective in treating multiple diseases.

I often wonder, why RA? What specifically about my condition screams RA? Is it the namesake joint pain because I certainly don’t have the inflammation to back it? Is it all in my head? I firmly don’t believe this but this doubt presents occasionally.

Whenever I go to a new doctor we list my symptoms. They look at their computer, eyebrows raised, and challenge the current diagnosis. Is it Fibromyalgia? Is it an odd inflammatory condition? I understand the skepticism. I look perfectly well, I pass all my tests but I feel horrible. This is probably a good time to interject I have never been accused of “faking it”. A fact I really appreciate but it is frustrating to sometimes wonder at my diagnosis.

I do have an RA diagnosis

I have RA. I have had diagnosed Rheumatoid Disease for eight years. I did not disclose it at first but eventually incorporated it into my online persona. I became comfortable with it. Everything I do with my hobbies keeps this disease in mind. I feel like I have it, but what if I don’t? I don’t dispute I have an autoimmune condition. They all present pretty similarly. Who am I if I don’t have RA?

Do you have sero-negative RD? What are your insecurities? Let me know in the comments!!

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

View Comments (34)
  • jdaph
    7 hours ago

    yes I to am sero negative R.A. but I have glaring symptoms of R.A. swollen joints, in fingers, knuckles, hands, feet, ankles, hips are hurting more and more all the time, knees,, you name it.. it sometimes gets frustrating because the medical community is so geared toward having to have positive blood tests before they will diagnose anything, and never take into account family history,, symptoms,, ect…. I get most of my help with the symptoms from alternative treatments.

  • Monica Y. Sengupta moderator author
    6 hours ago

    Hey @jdaph! Thanks for commenting on my article! !

    I am so sorry you have had so much trouble getting a diagnosis! I know what you mean though, so many doctors just rely on blood tests. I am extremely grateful for my rheumatologist who knows I have the clinical symptoms and treats them accordingly.

    May I ask…what are the alternative treatments that work for you? ~Monica

  • betharooski
    5 months ago

    I too have had zillions of emotions when I was told my labs were normal. That can be a good thing— we don’t want more abnormal stuff on our plate. However, I changed rheumatologists one time because I felt that I wasn’t believed. That was 20 years ago. Good riddance! Most rheum. docs have better research available to them than in the past. Hang in there! You are a valuable, worthy person who doesn’t need to show a scar or a broken bone/cast to be validated. Best wishes!!!!

  • Monica Y. Sengupta moderator author
    5 months ago

    Thank you so much for your lovely comment, @betharooski!!! It really is so appreciated. I’m glad you switched doctors. I seriously feel that a caring, empathetic healthcare team makes all the difference in the world when it comes to fighting this disease.

    Thank you again! ~Monica

  • betharooski
    5 months ago

    Count me in your group! My rheum says that I fly under the radar! I bet in a dew years the researchers will have a name for the bad boogers in our blood that cause rheumatic problems. I am a retired nurse. So——just think of the medical discoveries and new drugs that come out! There is hope!

  • Tiffilynn
    5 months ago

    So much, this.
    It is ridiculous to feel like a second-rate patient without positive markers. My rheumatologist never made me feel this way. I was clinically diagnosed also with positive outcome on aggressive therapy. Yet, still the voice in the back of my mind when I hear your labs look great (other than my low blood count that is chronically low) that asks “do you really have this disease?”
    I still fight this voice after 10 years and multiple surgeries.

  • Monica Y. Sengupta moderator author
    5 months ago

    Hey @tiffilynn! Thank you so much for sharing on my article!! I am so glad you have a rheumatologist that works with you and is keen on aggressive treatment!

    When there are so many physical indicators I just wonder why our blood tests don’t show anything! I wonder what the biology behind it is?? Thanks again! ~Monica

  • Monica Y. Sengupta moderator author
    5 months ago

    Thanks @tiffilynn! It’s so frustrating, isn’t it!! The same thing happens to me — we made a point of getting blood work during a particularly bad flare and of course, it all came back normal. ::smacks head::

  • Tiffilynn
    5 months ago

    I wish I had those answers Monica. I can have smack you in the face- visible (you would say “gosh, what happened to your _____ “ fill in body part ) inflammation and still not any real movement in my sed rate. Strange thing the body. Gentle hugs to you.

  • winterwaters
    5 months ago

    Thank you for writing this!!

    I’m going through this as we speak. I’m so lucky and happy to have doctors who have believed me all along, but I was worried I was crazy. I’m in between diagnosis right now. I could have either RA or lupus. My bloodwork looks great as well just some mild inflammation markers. The rheumatologist put me on Plaquenil after my consultation, I was so scared I was going to be left with nothing and stuck with unending pain with no foreseeable treatment.

  • Richard Faust moderator
    5 months ago

    Hi winterwaters. First, let me echo Monica’s sentiment that it is great news that you are feeling better. Lupus and RA are both autoimmune and share many traits in common. In addition, they can often be comorbid conditions. This article from our editorial team looks at lupus and RA: https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lupus/. Hope you get some more answers soon. Best, Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator author
    5 months ago

    Hey winterwaters!! I am so glad you are on medications that are helping!! I totally get what you’re saying…Sometimes, I just think I’m crazy too! But, as @k4rand mentioned below, we do know our bodies and we know there is something wrong…

    Thank you so much for commenting on my article!! ~Monica

  • k4rand
    5 months ago

    I feel the exact same as you.. I too have sero negative RA.. blood work always comes back normal.. I have classic symptoms.. I’m on Plaquenil and Humira.. it helps but there are days that I feel like nothing will help.. on the days I feel good, I question the diagnosis.. on bad days which are many.. I don’t doubt it.. it’s hard for people to understand without proof of abnormal lab tests.. my Dr did an ultrasound on my knees and drew out fluid from both.. she said there’s the diagnosis there..the synovial joints were full of fluid.. still I question the normal labs.. I am in the same boat as you.. hang in there.. we know what we have and how our bodies feel.. one day at a time

  • Monica Y. Sengupta moderator author
    5 months ago

    Thank you so much for commenting on my article and for the lovely kind words, @k4rand! I am so glad you have medications that help…What do you like to do during flares? I, myself, get stir crazy so I always keep aside things like books or coloring to keep my mind off the pain.

    Isn’t it funny how the body works? Your blood comes back normal but you obviously have inflammation..Shouldn’t it show up on the tests? All the unanswerable questions in life…

    Thanks again for sharing on my article!! ~Monica

  • Mary Sophia Hawks moderator
    5 months ago

    Yes, I have sero-negative RA. My RA was confirmed when I had a knee replacement, and the lateral side of my joint had been destroyed by RA. One year later, the VECTRA DA test came out. Finally, I have a lab indicator of my disease. If you have not had this test, ask your MD about it.
    You are still yourself, despite what your diagnosis is. Never forget that! Your disease does not define you. It may alter your life, but it does not define you.
    MS

  • Monica Y. Sengupta moderator author
    5 months ago

    Thank you for the uplifting comment, MS! It’s funny how I sometimes let RA define me. I feel like it just seeps into every part of my life. But, you are so correct, that it doesn’t and with or without it I am the same person. Thank you 🙂

    I did take the Vectra and that came out negative as well!! I was so excited to have a test and then it wasn’t helpful either; though, it has been a few years since I last took it…I will ask if I can take it again. Thanks for sharing on my article. I really do appreciate it! ~Monica

  • tmbrown51
    5 months ago

    I am also sero-negative and received the same semi-RA diagnosed in Jan 2018. After many months, Tramadol and Arava finally helped with most of the pain and joint discomfort but my ankles still hurt. Predisone did not work for me. I was on that last year for my carpel tunnel, which I found out is related to RA. Looking back, I also had other health issues in 2017 that were related to my RA (jaw bone loss, hearing loss, etc.) but I did not know it.

  • Monica Y. Sengupta moderator author
    5 months ago

    Oh no, tmbrown51! I am so sorry to hear that you were in so much discomfort for so long and experienced some losses along the way. You mentioned the carpel tunnel and that reminds me very strongly of my own journey. I was diagnosed soon after a tendon in my wrist swelled up. Little did I know that was the precursor to my diagnosis.

    I am glad you have found some relief! How long have you been on Tramadol and Arava? Thanks for sharing on my article!! ~Monica

  • Jo J
    5 months ago

    I think the most frustrating times in my life may have been when my first (not current) rheumy told me “I don’t agree with your symptoms.” Positive RA factor and great response to steroids. But she didn’t agree. The doubts she planted come back every once in awhile. Is this RA real? Then I remember, US results show synovitis in every joint they image.

  • Monica Y. Sengupta moderator author
    5 months ago

    Hey J0dspace! So, that actually kind of confuses me…Why did the doctor say that? Did she at least still treat you as though you had RA?

    But I agree, with these kind of conditions even if we have very strong evidence just a seed of doubt takes hold quickly.

    Thanks for commenting on my article!! ~Monica

  • lindajumper
    5 months ago

    I’m sero-negative and I’ll just say it: I want to be sero-positive, to know for SURE!
    I, too run through the garden of possible diagnoses. RA is a diagnosis of exclusion, at best! I’ve read that if you respond well to prednisone, you may have polymyalgia rheumatica. I respond well to prednisone but now can’t withdraw from it! What’s frustrating is the series of symptoms leading up to this diagnosis–fibromyalgia, joint deterioration, low grade fevers…ALL belong to other diseases, as well!
    Oddly, the sedimentation rate, (ESR) dropped beautifully after half dosage of Xeljanz but…I don’t feel better and my bp took a hit! So what happens when your labs improve….but your pain doesn’t and you’re still…SERO-NEGATIVE!!

  • Monica Y. Sengupta moderator author
    5 months ago

    Lindajumper!! I related so much to this comment and I felt the frustration right there with you. The problem with all these autoimmunes is they have very similar symptoms! My mother had “Lupus-like syndrome” because her condition fit Lupus the most, but not actually. Shrug. I am glad the Xeljanz is working for you…Are you going to continue with it?

    I figure that even if respond to all the meds at least I also respond to the biologics, but now they are coming out saying they work for multiple conditions too!

    Thanks for sharing on my article!! ~Monica

  • rebeccav
    5 months ago

    Hi Monica. Let me just say I always enjoy your posts. I had the opposite problem. I have tested positive for RA starting 20 years ago as a mother of 2 young children. My family physician tested me and said my levels were through the roof positive coupled with excessive pain, fatigue and chronic anemia. The rheumatologist saw no outward visible swelling in my hands so I was told I did not have RA and it was most likely Fibromyalgia. I knew in my gut that I was staring something serious in the face but was too afraid to fight for my case. I have since had my big toe fused due to a destroyed joint, shoulder reconstruction due to deterioration and may now be facing hip surgery. It wasn’t until my hands showed visible swelling and contorting 5 years ago that an RA doctor took me seriously. My advice is go with your gut. Only you know how you feel. I was basically told it was in my head. Being young and naive I accepted that diagnosis only to wind up with unnecessary permanent damage not to mention years of grinning and bearing my “made up” pain.

  • Monica Y. Sengupta moderator author
    5 months ago

    Thank you so much for the lovely compliment, RebeccaV! You have no idea how much it means to me. (I spent a long time feeling very isolated because of my RA and knowing that others enjoy what I write about helps me know that I really am not alone!)

    And thank you for the advice, like you I strongly believe we are our own best advocates and I have learned to speak up for myself with this disease. I also wanted to bury my head in the sand at the beginning but thankfully I had a doctor who said “no, you need to start these medications now”.

    Thank you so much for sharing on my article!! All the best and gentle hugs ~Monica

  • Oscarblue
    5 months ago

    I began having severe knee pain in my early 20’s as a young nurse and mother. A orthopedist started me on anti-inflammatories and when he did an arthroscopy on my right knee, I asked to check for RA. He didn’t see signs of it and my labs were fine.
    The next twenty years were of increasing joint pain, but I was fortunate in having a Dr. who felt it was a inflammatory arthritis and started me on methotrexate. The first rheumy I saw took one look at my labs, and said “You don’t have RA, why are you here?” I was furious but my MD sent me to another rheumy who told me my labs were fine, but that didn’t mean it wasn’t RA.
    Part of the reason RA was on my radar was because my father had been diagnosed with RA and died of pulmonary complications. I didn’t “want” RA, I just wanted to be doing the most I could to minimize the damage.
    The most affirming moment was when I had bilateral knee replacements and the ortho told me the damage was definitely inflammatory.
    Long story shorter, my diagnosis is still seronegative inflammatory poly arthritis. The most important issue for me is that I have been treated aggressively and joint damage is still minor because of that. I am currently on methotrexate, Plaquenil and Humira with prednisone bursts for flares.
    The nagging doubt that I was being a wimp or imagining my symptoms was gone and I just focus on dealing this disease whatever name they want to tag on it!
    Keep your chin up and be your own best advocate for YOUR health. Best wishes!

  • Monica Y. Sengupta moderator author
    5 months ago

    Oscarblue, thank you so much for the lovely comment!! It really reminded me that we do know our own bodies and no matter what is going on we know when something is not right and we should address it, in any way that we can.

    I also take MTX and as much as I wish I could say I don’t like it, I really love it. I feel an intense difference when I don’t take it and I do contribute my good joints to it!

    Thanks so much for commenting on my article! I reallly appreciate it. ~Monica

  • Lisaw
    5 months ago

    I sound exactly like you except I was diagnosed with Sygrens also. I have minor swelling in my right hand. Any pain I have is all right sided. Right hand, fingers, elbow, foot and toes. Minimal swelling but tons of fatigue. My blood work is all good except CRP is just a tiny bit elevated. I question daily if I really have RA or not.

  • Monica Y. Sengupta moderator author
    5 months ago

    Thanks so much for sharing on my article, Lisaw!! Isn’t it so frustrating how we get into our own heads about this? I know for me I wish I had some affirmation that I am in pain, that I do experience swelling and so on and so forth. From someone who has the same questions as you, I know it’s not in your head!

    Please reach out any time! Thanks again, Monica

  • rockcandi
    5 months ago

    I have sero neg JRA. A few doctors (rheumys) have diagnosed Lupus as secondary along with Fibromyalgia, Sjogrens Syndrome, & another I can’t remember. (It’s actually considered Mixed Connective Tissue Disease but none of the docs have ever diagnosed it that way); two doctors said I have JRA and Fibro but not Lupus; & my current Rheumy has told me she knows I have JRA but she’s not convinced I have Lupus but she’s not convinced I don’t have it either. I do have positive ANA and I think there are only a few autoimmune diseases that cause that but I’m not positive. Twice I’ve been told by my rheumys that they’re not sure how to diagnose me bc they know I have JRA and they are convinced I have another autoimmune disease but they don’t know what for sure. The first one I ever had, she told me she was truly baffled and the one I have now after doing blood work and brain MRI and X-rays told me “You’re a puzzle my dear.” (I LOVE my current rheumatologist.) At the beginning of my adulthood journey I was basically accused of faking it by my doctor at the community clinic that I had to see bc he was all I could afford with no insurance and a low paying daycare career. He didn’t come right out and say it but that was obviously what he believed. 7 years later when I got a new doc at the community clinic she seemed to believe me right away, had blood work done, found the high positive ANA and sent me to the university hospital. She later told me however that when I first came to her and I had checked 3 quarters of the boxes on the page containing the long list of symptoms she thought I was trying to get put on pain meds. (They were a huge problem in my town at the time so she probably saw it a lot.) But, she said when she saw my blood work she knew I was sick. (She’d told me she was 100% sure I had an autoimmune disease.) It was still a couple years before I was able to be formally diagnosed. My rheumy at the university hospital (I loved her too!) told me she could see the evidence by looking at me and by my X-rays and later an MRI but she wasn’t able to diagnose me until she could prove it with my blood work. I hadn’t seen her for almost a year by the time I had a horrible and debilitating flare. When I was finally able to get back in to see her (3 months waiting while flared so badly!) she said You’re 100 % worse than you were last year! And shortly after we had the convo on the phone that she was baffled but based on some of the blood work and my symptoms she was going to diagnose me with JRA and Lupus. My biggest concern isn’t whether I have JRA or not. I truly believe I do. After all I was in the hospital for a week at 6 years old while they did every blood test imaginable before diagnosing JRA. But I’m convinced I have some kind of neurological autoimmune disease and that it’s getting worse and worse but my rheumy has given up on trying to find out what else is going on. Geez Monica, I’m sorry! Every time I comment on one of your articles I seem to type a whole novel! Btw, whether you have RA or a different disease, you are still Monica; a caring, funny, light hearted, sweetie who loves her life and relationships with the two and four legged friends/family in her life, despite many hard struggles. Just stay proactive, voice your concerns to your doctor, & work with what you have to fight the symptoms of whatever is trying to wreak havoc with your body/immune system.

  • Monica Y. Sengupta moderator author
    5 months ago

    Hey!!! Are you kidding?? Never ever apologize for sharing your story!! I know we both have completely different experiences but I love reading your comments because I feel like I relate to your energy and outlook on life.

    I am sorry you had to go to so many doctors over the course of your diagnosis. I believe that continuity of care makes a huge difference in how we live with this illness. I am also really sorry you’re dealing with a potentially very different autoimmune. Don’t you wish that sometimes our chronic conditions fit nicely into their descriptions? It would at least make some part of this process a bit easier (a bit!)

    Thank you so much for the lovely compliments. I needed it today. I am working on a new article about why/how I’m feeling a bit low.

    Thanks again, rockcandi!!!! 🙂

  • Vaash
    5 months ago

    Reading your post and being able to relate is such a relief.

    Firstly I am so sorry that you have to go through this. It’s frustrating .. I know .. my blood work is healthy and so my X-rays have come back as normal.

    I am on prednisone and a whole bunch of other medications for arthritis and gout but I haven’t been given a diagnosis yet so I am going to get a second opinion soon but to get a booking with the top specialists in South Africa is difficult.

    Have you done a ultrasound or mri yet? I’m thinking these are my options to get some sort of clarity on what I’m going through at 29 years old and to give myself some sort of peace of mind.

    I’m fine (70% of normal) for a few hours every day then towards the afternoon/evening my ankles (especially my right side), my knee, my elbows and wrist start getting really sore or start locking and then late evenings or early morning I get like a numb tingling feeling in some of my fingers and I get such a sharp chest pain sometimes when I try sitting up, have you experienced these things as well?

  • Monica Y. Sengupta moderator author
    5 months ago

    Hey Vaash! Thank you so much for sharing on my article! (Btw, we are very close in age – I am 28). I’m glad your doctor put you on medications right away but I’m sorry you did not get a diagnosis. That is extremely frustrating!! I have experienced some of these symptoms and some of them (for me personally) have been due to unrelated conditions or injuries. Have you spoken to your doctor about these new symptoms? S/he should be able to help you find out if these are side effects, symptoms of the RA or completely unrelated!

    Have you done an MRI or Ultra? I had an MRI for my back specifically that did not show anything and I have not gotten an Ultrasound.

    ~Monica

  • NPEOttawa
    5 months ago

    You are my twin. 95% the same. Beautiful blood, little swelling (right middle knuckle area), no fevers (lots of night sweats though), Xrays and MRI of right hand shows little – MAYBE some minimal deterioration in 2 small areas. Diagnosed on clinical symptons alone. Now kicking around the idea of fibromyalgia. Lots of joint pain, esp hands and feet (3 on a good day, 7 on a bad one), esp at night, worse if I’ve used them a lot (e.g. driving!) but the rest of the joints, and even some muscles, get into the act sometimes, esp when the barometric pressure is falling. Methotrexate helps some. (leflunamide didn’t.) On Tramadol with Tylenol for pain. Helps some I think. (one difference – don’t think prednisone (10 mg) helps) Trying Celecobix now. Haven’t tried Orencia. Doctors don’t accuse me of faking anything, but I don’t tell others that it’s seronegative cause I’m afraid they will. It’s been about 2 years now. It’s not all in your head, cause I know it’s not all in mine! But is it RA?? There doesn’t seem to be another known condition that fits. Perhaps I won the triple stakes and it’s RA, OA, and fibromyalgia! I do have some OA in places. I have noticed that my fingertips tingle frequently, and the outer joint on the fingers hurts as bad as the rest of them sometimes. They assure my this is OA, not RA, (in which case they must coordinate the attacks 🙂 I was checked for carpel tunnel syndrome as I have had surgery for that in the past, but it was negative) Currently I have 2 trigger fingers and another is starting; I’m waiting for cortisone injections. My newest Rheum. seemed interested in the fact that I have had endometriosis and I am reading now that there is a significant correlation. Do I want this to be RA?? Well, I’m afraid that if it is not, it is something worse. But if it is something else, there may be drugs that help more. Or it may go away? I wish there was no question about the diagnosis, but I am acting as if there isn’t until I know differently. And after 2 years, I’m still reeling from this diagnosis, and in a bit of shock about the incurable part.

  • Monica Y. Sengupta moderator author
    5 months ago

    NPEOttawa – Hello twin!! I felt like I was ready my life through your comment! Though, Prednisone has helped me a lot. OA and Fibro are two common co-morbid or co-existing disease with RA. I thought this article (for the comments) might interest you. Many of our community members share the diseases they have in addition to RA. https://rheumatoidarthritis.net/q-and-a/other-condition/

    My doctor’s also played around with Fibro because during a particularly difficult flare everything hurt. The pain radiated from my joints and through every body part. However, once that flare passed I didn’t feel the widespread pain so they stuck a pin in that.

    If you ever want to chat or need some support please come back! We are here for you in the good and bad times. I’d love an update on your conversation with your rheumatologist! All the best and thank you so much for sharing on my article!! ~Monica

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