Blood Tests for Rheumatoid Arthritis, part 2
Many people with active RA have “normal” test results
In my last post, I posed the question: Is There a Blood Test for Rheumatoid Arthritis? I told you that the answer is yes – and no. I went on to describe the “yes” by summarizing four principal blood tests used in diagnosing Rheumatoid Arthritis. Now it is time to elaborate upon the “no.”
I found this startling:
You may already know that there is not a blood test to definitively measure Rheumatoid Arthritis. No blood test can be used to precisely diagnose RA in all patients. But just as importantly, there is not a test which can reliably gauge the degree of RA activity within a patient.
But, wait, it gets more interesting:
The most thorough study of the usefulness of these tests was a large study conducted in both Finland and Tennessee. Almost 2,500 patients were studied over a period of 25 years. The CRP, sed rate (ESR), and Rheumatoid factor (Rf) were all monitored.
Look at some of the results. ESR was normal in 45% (Finland) and 47% (Tennessee) of patients. CRP was normal in 44% and 58%. And all Rheumatoid factor (Rf) tests were negative in 38% and 37% of patients.
Why does this matter?
Doctors commonly use these three tests to “monitor disease activity.” That means they are looking to these numbers to show whether the disease is active and whether a patient’s current treatment plan is adequate. Some doctors are more reliant upon them than others. I have met one rheumatologist who says that he relies upon them completely.
So read this carefully:
Many people with RA experience plenty of active and damaging disease while one or all of these indicators are “normal.”
Here are a few cases in point:
- “Sometimes also patients with rheumatoid arthritis have low CRP response in relation to the severity of the disease.” Axis-shield
- “By the same token a normal sed rate is meaningless in a patient with known SLE if they are having symptoms of a flare.” (Sounds like this rheumatologist considers the lab test pretty useless to measure flares in Lupus.) Nathan Wei, MD, FACP, FACR
- “However, a low CRP level does not always mean that there is no inflammation present. Levels of CRP may not be increased in persons with rheumatoid arthritis and lupus. The reason for this is not known.” University of Southern California
- “Many people with active RA have inactive values of ESR/CRP and many with inactive RA have active values.” Journal of Rheum.
- “Both ESR and CRP were normal in 33% and 42% of patients” in the large study mentioned earlier. Journal of Rheum. abstract
What is the bottom line?
Only a small percentage of people with RA actually had abnormal results to all three blood tests (ESR, CRP, and Rf) in the huge Finland / Tennessee study. “All 3 tests were abnormal in only 28% in Jyväskylä (Finland) and 23% in Nashville (Tennessee).” The authors of the study concluded: “Normal ESR, CRP, and RF are seen in a substantial proportion of patients with RA at this time.” Journal of Rheum. abstract
There is hope.
I had already spent many grueling hours researching for this series when I happened upon an article entitled The Many Myths of Erythrocyte Sedimentation Rate and C-Reactive Protein. I was thrilled to find a rheumatologist who holds the following viewpoint. “Learning when to ignore a test and when to rely on it lies at the heart of good medical care… It is, perhaps, time for more research about testing and measurement in clinical practice.” I recommend the article in the Journal of Rheumatology by Frederick Wolfe, M.D.
Recommended reading:
- Is there a blood test for Rheumatoid Arthritis? Part 1
- Dr. Dolittle and Rheumatoid Arthritis
- How Rheumatoid Arthritis Impacts Lives
Have I told you lately that I LOVE YOU!!! 🙂
Thank you for researching this information. For the last year I have had the symptoms of RA but all of the tests mentioned come back normal so I have been ignored and not yet diagnosed. I feel like I'm losing my mind sometimes. I'm going to a doctor 3 1/2 hours away to try yet again, to find out if this is indeed RA or not. Even though I am not diagnosed with RA it is encouraging to read your blogs. Thanks again. Sarah
Hi Kelly, Your posts are so informative and I really appreciate it. I don't know if you received my second email, but I thought I would copy it here just in case:
Kelly,
I hope you are having a lovely holiday. I must have been nice to meet another fellow RAer. I really enjoy your posts. I don't find that I'm that eloquent… ;p
I'm not exactly sure of everything my rheumatologist thinks is weird. I am sero-negative. I do have swelling, but not typically red and hot to the touch. However, I have had an CT scan of my hands and it shows damage. I may also have felty's syndrome. Have you heard of this side effect of RA? I guess only about 1 % of RAers develop this side effect. I have very low white blood count (which limits my usage of methotrexate. I used to take 10, but had to be reduce to 6 weekly because of my count) I have quite a few nodules, and slight enlarged spleen. My symptoms started when I was about 15 but didn't really develop until I was in my mid-twenties. It really seemed to slowly materialize. I just didn't wake up with it, it was very gradual, which isn't the case with my RAers.
Thanks for the praise; I just feel like we have to give our all to get somewhere with this thing.
Mallen: I thought I replied to that email. Hmm? I will go ck that out.
It was helpful to read this and I appreciate your putting it out there. It took over three years from when my RA became really disruptive and when I got a diagnosis, mostly because my ESR, CRP, and RF were in the normal ranges or very close.
One rheumatologist told me flat out I didn't have RA and I had a strange genetic disorder and would just have to live with the pain; also that I was really just being a baby…the your a crazy young female so just take two asprin and go away treatment. Thankfully I didn't give up as a year later I was in another rheumatologists office, in far worse condition, and he described the whole progression of my disease as relatively classic. It started out slowly in my teens, masquerading as tendonitis or ligament issues around my joints….mysteriously not helped by any of the treatments. Then in my late teens and early 20's it started to get much worse, until by 21 it was all I could do to go to work at my desk job and go home and fall in bed. Yet since no ESR, CRP, or RF came back drasticaly abnormal, no diagnosis until late last year (I am now 24.)I wish more doctors were aware that the ESR, CRP, and RF are not infallible proofs of RA, but that they have to actually see thepatient in front of them and look at history as well. Probably more to it as well, but I know in my case it could have helped.
V,
You are still so young. We all are!
But, Hey!! This is NOT just about diagnosis.
They are using it for determining our treatment, too. This is the critical thing: we have to get them to treat the patient, not the test tube.
My last RA doc did not even take a history. He said the those tests are all he needs to see.
Thankfully my Rheumatologist only uses those tests if they provide useful information. If they show nothing, they show nothing and he continues on with treatment. I am blessed 🙂 If only he weren't an hour away….but regardless Doctors need to see the patient. I understand they see hundreds of them, they are overworked, and have to jump through crazy hoops to keep insurance companies happy, but despite that I still expect my doctor to SEE and HEAR me when I have an appointment because it is my care. I am blessed to finally have a PCP and an RA doc that listen and hear me and treat me as a whole patient not just as a test result or a statistic or as someone to be rushed in and out so they can document the appointment. But I know, from seeing enough doctors who don't listen and who treated my test results, that they don't all do this…hopefully as mroe research showing that these test results are borderline worthless comes out more doctors will be aware and may think about it, but until then I hope we can all be our own advocates by not tollerating doctors who only see the tests…if that is possible (I know it is well nigh impossible sometimes given the limited access to rheumatologists….as I said I drive over an hour to see mine I know many others go much farther)…so further scattered thoughts 🙂
Hi Kelly,
Thanks for the very informative post on RA tests — and for this blog. I ran across it while visiting RA Central. It's great to finally find a community of people who also live with RA.
I'm 52. I was diagnosed with RA when I was 31. Went through more than 10 years of simply awful pain, and then the disease went into remission. It's back now, though so far it's not as bad as it was then. I'm seeing a rheumatologist and taking Arava and sulfasalazine. The doc says they're helping, judging by the bloodtests. I just have to believe him.
I've been lucky in that so far, I've not had any deformaties, though I was disabled frequently during that first 10 years with the disease. It doesn't slow me down TOO much right now, so fingers are crossed.
Nevertheless, this is a very lonely disease. So many people don't understand it at all — they think only elderly people get it, and they have no concept of the pain and disability it can cause. Thank you for starting this blog. You're an angel, you know?
I'm learning so much from posts like this. Thanks!
I feel like I've been reading my own journal…so many stories seem so familiar to me. I've had drs ignore symptoms because the blood tests weren't positive AND have had a rheumatologist ignore positive blood tests because she didn't think all my symptoms were present!! Oh, so frustrating.
I have a follow-up appointment on Monday with my new doctor (who I love)and have lots of questions for him. I love the view point you just discovered, Kelly……the heart of good medical care…That's the key and unfortunately for many, that's hard to find.
Also, if many of you don't keep a journal, I would encourage you to do so. You don't have to let anyone else read it!! My husband has asked me to read it to him on occasion and I think it really has helped him understand how I am feeling. Also, some of the good days run together with the bad days and they are hard to keep up with so a journal really helps!
Hi Kelly,
I hope you realize how much your time and research help alot of us. I was dx,d with lupus first over 10 years ago, I stayed with the same rhum. for years and he said it was MCTD, fibro. syogren's and then R.A. He never tried much new because my stomache always botherd me so he just kept me on the steriods forever. I tried several other doc who all gave me different dx, now I have found a rhum. that I like he says lupus is under control that it is RA, but even he confuses me when he says it's probably mostly fibro than starts me on an RA med. Rituxan. I also hurt in all my joints and swell but I don't get hot or red. It really makes you feel like your going crazy, I know what I feel like but thier tests and changes make me feel like it's all in my head. I just listen to myself and trust how I feel and what I know is going on. I just wanted to tell you I appreciate the time it took to explain what we all go through. Jeannie
Hi Kelly,
Thanks for all this information. It's nice to see that what you are experiencing is there in others as well. My first rheumatologist refused to diagnose me with RA because I didn't have abnormal sed rates and CRP tests along with the high RA factor. Then I found current Dr. who by using ultra sound od joints documented the joint erosion in hands, wrists and feet. Since I have only been on the current meds a few months, can't really say how they are doing — I have good and bad days!
Thanks for all that you do!
Amy
I live in North Georgia(US) and I need to find a rheumatologist that uses the criteria that are listed on this site. I have periodic swelling in my hands, I have knots that started on my right hand and now are on my left. I had a doc tell me when I broke my collarbone that I have very significant arthritis in my neck c5. I have extreme fatigue and have developed several cysts in my left foot that are attached to the tendon that controls my big toe. I have pain in my feet and ankles that is unrelenting. My blood tests came back normal so my pcp said that I do not have RA or it would show in blood work. The only thing that helps me is injections of prednisone. Please help as I am afraid that even my family are beginning to doubt the reality of my pain since my doctor dismissed it.
Eddie,
It’s very hard, but we often have to go to more than doctor to get an RA diagnosis. I remember it being a nightmare. If your pcp will not send you to a rheumatologist, then you will have to try a different pcp. If the rheumatologist can not give you a clear diagnosis which makes sense to you, then you will have to try another rheumatologist. I am very sorry to say that it is this way. I have even gotten referrals from friends to see “their” rheumatologist – more than once – with bad luck. You would be shocked if I told you how many doctors I have had to see in order to find out what was wrong.
Eddie, if you do have RA, then you need to be treated as soon as possible with a medicine which will fight the disease, so you can’t give up.
If you don’t have RA, you still really need answers. I’m so sorry you are going through this.
Have a look at this post. There are a couple of links to RA blogs written by some good guys. Maybe support from another guy will be helpful too. Also, if you like, you can join the Facebook group (link also up on the right sidebar) where you can post a question which the other Facebook folks can see. They love to help each other & there are lots of guys there, too. I hope I helped some. Let us know how you are doing.
One last thought, tell your pcp that there are new criteria for the Rheumatoid Arthritis diagnosis from the American College of Rheumatology. Have a look at this series (about the new ACR criteria) and the links in the posts.
To V:
I have all those same symptoms, yet only CRP shows elevated inflammation, so no diagnosis. I would very much appreciate knowing where I can get in touch with your Rheumy to possibly get a diagnosis too. I spent all of my teenage years with horrible tendinitis issues, and as someone who worked on her feet in retail for many years, I would go home each night and after 10 minutes of sitting, try to get up and couldn’t without excruciating pain. I did this type of work for over 30 years! And I will be 50 this May and still no one is listening! It is nice to know that I am not alone in this. It is so frustrating. And the worst part is there are no Rheumatologists in the immediate area of where I live. I have to commute two hours to find one.
Michelle,
I’m sorry to hear of your trouble finding diagnosis. I don’t know whether V will reply, but I want to encourage you to keep trying. I know it is hard to have to travel far & wait months for new patient appointments, but I hope you can keep trying until you find an answer. Good luck.
I am the QUEEN of sero-negative RA!! When I was diagnosed in January 2008, here were my labs: RA Factor: Negative. Anti-CCP: NEGATIVE. Anti-ANA: NEGATIVE. ESR: 30 I’m (52, so that’s not abnormal). My CRP: Never got about 17, EVER.
Did I have full-blown RA? HELL YEAH! It took a full year on Methotrexate and Plaquanil to get things under control (and I realize many, if not most, never get away from the pain).
RA is the worst pain I ever experienced–and I came down with an acute case in HAWAII, and had to wait 3 weeks til I was back home and could see my GP and a Rheumy. I could barely walk 50 feet or hold a cup of coffee.
The worst thing was, I had to be treated WITHOUT STEROIDS because I already had Cushings Syndrome from being treated for a pituitary disorder. That was fun. I’m no longer Cushing-oid, but I’m still fat–this is something that many people with RA can relate to, I think!
Today, I have no pain and full joint movement, but I still feel weak and my muscles have atrophied (I used to be VERY athletic). Now, it’s Pilates and walking. I don’t kid myself that I’m doing this well only because I have a comparatively mild form of RA. I lucked out (relatively speaking–I would rather NOT have RA in the first place) and that many, many people have unremitting, constant pain, inflammation, and infirmity.
BTW, my last CRP was 5.3 and my ESR was 2.0
I still tire easily and my joints creak.
Hi there – I’m new to RA, and not even sure I have it. My issue began with tennis elbow in my left arm which was diagnosed in urgent care about a month after it started. Later that week I just happened to have an appointment with my GP and he noticed a rash across my nose and cheeks that prompted a Lupus test. I’m negative for Lupus, but my ANA was positive with no titer or pattern. By the time I got the lab results, my other elbow was hurting and things quickly progressed to include both hands, wrists, and a myriad of other symptoms such as fatigue, swelling, stiffness, a burning pain in my smallest knuckles when my hands get cold, etc. Since my GP is so awesome, he didn’t hesitate when I told him I’d like to be tested for RA. Today I learned that the RF is negative, but since my symptoms have continued to progress, doctor asked me to come in today so he could take a look at me. He told me that since my RF is negative, only a Rheumatologist can diagnose me based on my symptoms. But he did say that I obviously have some sort of inflammatory response going on and that I have many RA symptoms. He gave me a big shot of Prednisone and a 7 day course of 40mg per day. He said if I respond to this aggressive treatment then he knows how to stop another flare up in the future. I have to go back in two weeks to see how I’m doing and (I think) for a referral to the RA doc. He also said that I may be early in the disease process which explains why the symptoms are there but the test isn’t positive. I told him that I just wanted to know one way or the other as soon as possible so we can treat it aggressively and (hopefully) get back to life as normal as soon as possible. I’m a professional photographer who shoots pro sports, so my job is very physical and requires a great deal of energy and stamina. I am often on my feet for twelve hours or more, and carry a great deal of heavy equipment. With the way I’ve been feeling this past couple weeks, there is no way I can endure a day long shoot. I just want my life back.
Hi Jody, sorry to hear about this mess you are going thru. So you just started that big dose of prednisone? That will probably make you feel much better. I hope you can go back to “life as normal” as you say. That would be great.
Thank you so much for this post. I am going through the long process of diagnosis. My rheumatologist relied on the tests and now I have swelling in my hands and my index finger turning in towards my other fingers. They won’t even get me in to see me now that I have proof something is going on. I am going to see my pcp today and hopefully will get somewhere and see a new rheumatologist at the end of June. Your post was encouraging as I thought it was hopeless and everyone would just think I was a nut. 🙂
Thank you again and I look forward to reading more.
Kim
Good luck today Kim. Did you see the Do I have RA? and Newly Diagnosed pages on the top menu? Let me know if you are having a hard time finding some info that you need. Hope it’s not RA & I hope you get an answer soon. My advice: take pictures of anything weird in case it doesn’t show up when you finally get into the rheum. dr. & ask for copies of your test results, etc.
when i was first diagnosed 3 years ago, my sed rate was 70, and was the only thing that showed up on a blood test as abnormal. i’m fortunate to have a rheumatologist who doesn’t rely exclusively on tests to confirm her belief that i have RA. she reminds me often that my physical symptoms tell her that RA is my disease, not the lack of CRP, or RF. she didn’t wait long to put me on DMARDS and biologics either, despite the lack of hard evidence a blood test might provide. i thank God for her.
Amy, I thank God for doctors like that, too. Often, those tests “turn up” positive eventually. But then, a patient has lost the opportunity to treat early.
I have had RA/OA/Fibro for over 6 years now. My brother went to a Rheumy a few years back. Now from what I know with PMR you do not have an elevated sed rate,but thats what the dr said so be it. Well he’s gone back now and his RF: 1360, Anti-CCP: 191 and still tells him she doesn’t think its RA.
I feel she is afraid to treat him due to the fact that he has had a heart attack approx 7 years ago. She told him it’s GOUT!!!! I can’t believe it, I told him to get a second opinion but he likes this doc.
Sheila, that’s incredible. I agree about the 2nd opinion. If he likes her, he should take her to lunch, but he still needs a 2nd opinion!! LOL 😉
Hi Kelly!
I really felt compelled to respond to this particular article because just a few months ago I was diagnosed with Sero-Negative Rheumatoid Arthritis. All of my blood tests are within normal limits, so my diagnosis was made by a combination of all of my physical symptoms along with visual inflammation, swelling, and “spongy” joints, as my Rheumatologist calls it. I was immediately prescribed Plaquenil and a NSAID. Both helped to a degree, but at my last visit I still had noticeable swelling and “sponginess” in my joints so my doctor said it was time to move forward (i.e. Methotrexate). She is definitely of the mind-set of treating RA early and aggressively. I just wasn’t ready to hear it so soon. I justified the diagnosis of Sero-Negative RA as “not so bad”because “hey, all of my blood tests are still normal.” But I was wrong, obviously, and not prepared for what lies ahead.
I must tell you, I am grateful for having found this blog. I’m grateful to you for having the courage and the determination to face this disease head-on, giving all of us hope and support. I also appreciate everyone out there who responds with their own personal stories and antecdotes. It makes me feel as though I’m in the company of “friends” because, finally, I am understood!
Hi Kristi,
I hope your doc has time to talk with you about your fears so you can be comfortable with the mtx prescription. If she’s seeing that the RA is still active / progressing, then she is wanting what’s best for you to try to get that to slow down. Mtx works on most patients, so hopefully it will be a help to you. There is a mtx section here on this site that might help ease some fears too – see the menu up top.
Kelly, I am so glad I found your blog. These articles are very informative. I too have “failed” most of my tests. My doctors have treated my symptoms but I often feel like a hypochondriac! I took Remicade for 10 years and called it a miracle drug but it stopped working in May. I am due to start Orencia soon but have had so many URIs that I want to wait until I am really well. Thanks again for all your great work.
Thanks, Peg. I hope you are well enough soon for treatment. We just need to use a better tests – the patients shouldn’t have to feel like that.
Hi, I have RA (& Fibromyalgia, osteoarthritis, borderline diabetes, high blood pressure). Blood tests have come back mostly normal, except for the CCP-AB, which dr. says proves I have RA (besides all the pain symptoms). Rheumatologist & Primary Dr have taken me out of work on Permanent disability. I have been fighting my company disability insurance for payments. They say that I have a minor level of RA & should go back to work- I am a preschool teacher of 3 yr olds. I walk slow (with a cane), can’t bend well, should not be on my feet all day, can’t take kids swimming, lift 3-4yr old kids to changing table, etc. They say to go back to work & pain reported is subjective, even dr reports are subjective- only the tests are objective. Now I have to keep fighting.
Primary dr office said my knee xrays show minor osteoarthritis& I should not be in pain-BUT why do my knees hurt so much? It is not fair that I can spend almost all of my 55 years in pain & no one believes me.
You’re right it’s not fair. It won’t ever be fair, but I hope we can increase awareness of RA so that insurance (or medicare or national health services) can’t run us over that way, saying pain is “just” subjective. There is no way to “prove” pain and yet it’s believed with migraines or plantar fasciitis or backaches…
Thank you so much for this post!
I’m 21 and have symptoms that seem to fit in with RA or MCTD. My GP was convinced it was RA. She ran CRP- normal, ANA- positive, speckled 1.80. My doctor said well if your CRP is normal you don’t have RA.. Well when I saw your post above I wanted to scream!
I’ve since had my RF tested, which is also normal. And my ANA is still weakly positive.
My fingers wont straighten or make a fist. They’re swollen and sore and so are my knees. I’m now waiting to see a rheumatologist now.. Not what a 21 year old should have to worry about, not what ANYONE should have to worry about!
Thanks, I think that is an outstanding tool when my Rheumy says “all your blood work is good so your pain is not from RA” She will get an ear full from me. I am sure most of us has heard that on more then one occasion. My previous Rheumy told me I had the flu and should see my family doctor when I went to him about my pain.Thank you that information is very good as is all your articles.
That sentence should be banned!! I hear it all the time from patients. It is nonsense. Good luck to you Bob.
I have RA and Fibromylagia, and no matter how severe the RA was I don’t remember ever any elevated inflammatory markers and I’m seronegative. I have a brandnew rheumatologist and he thinks the RA isn’t active if these are negative, but I see that is not true! Why do some of them think this true and others know to look at the clinical presentation more than bloodwork?
To all of my fellow RAer’s…I truly feel your pain. i for one have suffered with RA since 2005. That is when it was diagnosed, but in hindsight I had suffered with it for many years prior. I, not being one to complain, just brushed off the complaints that went misdiagnosed for many years. Although I was given the diagnosis, I have NEVER had an abnormal blood result. For someone who is fighting with a disease that is not “believed, understood or given any credibility” it is REALLY hard to sound credible if “the blood work isn’t even credible”. I have fought this hard war all these years of not being believed by family, friends, coworkers…thank God I have a wonderful Rhuematologist who believes me!! He doesn’t even bother to draw blood work anymore…what for! The one reason that people are now “starting” to believe me is because I am starting to have skeletal changes to my hands. Even with that, they STILL want to think it is “just arthritis”…”look my knuckles are big too”. I just smile and nod. I have learned that this is a war that I will fight with my fellow warriers, my loving partner and my caring Rhuematologist who will leave no medication stone unturned. I felt so alone for so long that my “numbers” weren’t plausible, but now I just smile and know that I am “more normal than not”.
I have been reading and following your site since stumbling upon it last December. This, after a friend with severe RA suspected I had it, too. Following onset of multiple symptoms in October-November, my first visit to the rheumatologist was neither positive nor negative, which I suspected (let’s run some tests & see what we can find and try some steroid treatment in the meantime). Well, the steroids were a God-send, the test results were iffy. Positive RA factor, positive CNA, but low SED rate and low CRP. So, inconclusive for RA, in spite of pain in more than 8 symmetrical joints (higher than 5 on that terrible 1-10 pain scale), morning stiffness, unable to walk somedays, swelling in ankles and knees and response only to steroidal treatment. Now, 4 months later, I’m on my 2nd round of steroids, Plaquenil, and headed back to the rheumy next week with this article in hand! Thank you!!
I’d love to hear how it goes for you Mona. The most conclusive test is the anti-CCP, so ask him what your results were for that. It’s still possible that it would be negative also, at least for the first couple of years.
It’s hard to imagine with your presentation and an elevated Rf that it was “inconclusive for RA.” RA diagnosis is still subjective, and a decision by the doctor. Diagnosis is mostly by visible symptoms which becomes more tricky when you are taking prednisone and a dmard (plaq) which can suppress your syymptoms at least partially.
There are several articles here about diagnosis if you want to read more. There is one on the main menu and then a list on the Tags List of topics at the top right of the page.
Hi, sat here in UK with stiff fingers and sore warm elbows and shoulders, seen the rheumatologist once already, negative RA factor and other bloods negative as well. Ultra sound scans of hands normal. Been told I have a virus which mimics RA symptoms. Now been given naproxen for pain and inflammation . Told symptoms will disappear after few months at most. It has been 6 months since started with pain in feet when getting out of bed in the morning or getting up from sitting. Then pain in two fingers on r hand. I am 39 and have family history of osteo (mum) rheumatoid ( aunties on both sides) gout ( brother and dad) . Feel as if energy being sucked out of me most days, especially late afternoon. Sorry to moan but feel as if being treated as a winge by the medical profession.
Thanks for the site. It’s brilliant!!!
Firstly, thank you Kelly! This site has been a source of information and comfort since I stumbled upon it a few weeks ago. I just started the diagnostic process. A few weeks ago, I went to my primary care doc for fatigue and pain/stiffness in my hands and fingers that started in early January. Her first thought was RA, and she ordered RF and CRP tests. Both came back negative. Since seeing her, I feel like my body is completely rebelling. The day I had the blood work done, the elbow of the arm where they drew the blood became intensely painful. After that subsided, the pain started moving from my hands up my arms – wrists, then elbows, then shoulders. I had one weekend where I had sharp, stabbing pain in both knees that only lasted an hour. And a few days ago, while sitting at my desk at work, my left shoulder became so incredibly painful that I couldn’t lift my arm. When I woke up the next morning, it was like nothing had ever happened. The day that my shoulder incident occurred was the same day I got my negative test results. I thought I was going crazy. I have a follow-up with my doc in a few weeks (she insisted that I have one, because if my tests were positive we needed to discuss a game plan, and if they were negative we needed to keep looking), so I’m not yet sure if her response will be to investigate RA further, or to explore other avenues.
But thanks again for the wonderful site! It will hopefully keep me sane during the diagnostic merry-go-round! 🙂
At my last visit my rheumatologist stated that she doesn’t consider my RA numbers high until they are half my age. Does this mean that as I get older I should be able to withstand more inflammation without adverse effects? Just thought this was strange. Oh, I was “normal”. Hurt like hell, but normal. Good to know, right?
Thanks Kelly for laa your info. My new Reumy says i don’t have RA even though i have tested positive for Ra. I saw him two days ago and i do not want to go back. He made me feel like i was making up my pain up because it was not substainsiated by the blood work. He gave me a physical exam and said my hands were puffy and slightly red but didn’t think it was typical of joint swelling! My hips knees and shoulders are bothersome to me as well and he says i have bursitis and gave me 3 shots of cortisone. I am so flustered with him right now. Now he says I have fibromyalgia not RA. I am so confused! Do xrays show inflammation or joint deformatity?
Thank you for this post because it really helps me understand what is going on inside my body. Reading how many other RA’ers have negative bloodwork just makes me feel like I am not alone. I am very lucky to have an amazing Rheumy who doesn’t go by blood work. My ANA is positive but my RF Anti CCP, ESR and CRP are negative. My first visit with my Rheumy, he looked at me and said, those numbers mean nothing to me, I can see swelling from across the room. I have consistently had 20+ swollen, spongy and inflamed joints. My last appointment two weeks ago, he wanted blood work just to see if my ESR and CRP had changed. They were still neg. surprisingly at
The office visit he told me how bad my RA was and how we hadn’t gotten anything under control yet, he didn’t care about the numbers, just how my joints felt and looked and by my own accounts. It’s very refreshing that he doesn’t go by the numbers, but it’s very sad that many dr.’s do.
The one thing that I don’t understand is why the numbers done reflect in the blood work. I have so much visible swelling everyday, and now that I am back of prednisone, I’m feeling so much better because the swelling is down. How can it be that the blood work doesn’t reflect what is really going on?? It’s frustrating.
Im only 5 months into my diagnosis, and my Rheumy believes that within the year all my labs will become positive based on his experience. Who knows. This disease is so frustrating in so many ways. Kelly, thank you a million times over for this website!!!
Say, I am new to diagnosed RA but i feel i have had it for several years now, question is What Now? i enjoy your sights have set up with Drs. now what? I have even recently even signed up for a research study as I have no insurance.
Hi!
Thank You,Kelly!! THANK YOU !!! THANK YOU!!! I do not have the energy for the copious hours of research you must have conducted to find these studies and articles.
I will however ask my husband to help me look them up and print them off (or copy them at library). Definitely worth bringing them to my 2nd appointment at my new Rheum. Doc. Maybe it will help me get treatment before I can’t move at all. The numbers are staggering.
My Sed rate and ANA have been consistently normal. My previous Rheum. Doc.,(Dr. Don’t Question Me) Told me during an appt. that she was concerned about all my stiffness which indicating deep inflammation in addition to what could be seen. During the appt., the Dr. and I disagreed about how much treatment I need (me wanting more treatment than anti inflammatories and the Doc. not wanting to treat me). Sooo, the next day when my sed rate came back norm. the nurse called me and said “Your Sed rate is normal, you don’t have any inflammation!” I barely replied because I was (Stunned)considering how concerned the doc. was the day before about my clear inflammation!
Hopefully my new doc. will take med. studies and journal info and be willing to treat me. As the saying goes, I have found it harder than pulling teeth (with RA we could have other sayings), to get treated with seronegative RA. The doctors don’t seem to know or act like they don’t how high the percentages are. UNless it;s an insurance thing, the Doc. want to be covered if a treament goes wrong. I don’t know about the rest of you but I would sign a release to get meds. The disease progress is worse than the med. risk right now.
Thank You again for your time, Michele’
PS: My mom recently told me that she and all her sisters always have negative SED Rates including my aunt with Polymyalgia Rhuematica (RA of the muscles)
Thank you for connecting the articles! I didn’t realize they were, What a blessing!! My new Rheum. Doc. (Dr. Skeptical Rheum.) didn’t believe me when I said that: my mom, all her sisters, me, my sister, and who knows who else alive or dead in the family only get normal Sed. rates. Our Sed rates are normal no matter the obvious inflammation.
Maybe he will realize that it is not just me. This is actually something the Medical world has documented. YEAH!!
For someone who has never been a “book case”, it’s a relief to discover that I’m much more “normal” than I thought. THANK YOU!! 🙂
Michele’
Hello,
I just read thru this page of comments. Every time I do I’m amazed at how much I have in common with you all.
I wasn’t diagnosed as a child because I didn’t have positive (or neg.) bloodwork, and my joints didn’t stay red,swollen (on the joint),or look damaged (to your eyes). However, my morning stiffness and pain was so bad that I often could not “uncurl” and open up enough or move enough to get dressed on my own. Also, I had the malaise, low appetitte,ect. Now I know that tendons,ligaments, and muscles can be affected even with “regular” RA.
Over the years I had flares, some symptoms being new and eventually damage being done. After each flare I couldn’t get as well as I had been before it. Many symptoms that I’ve had over the years, no one told me could be related to arthritis. (I have always been told my blood work is fine so I could not have RA -or….) I’ve had different specialties (esp.NEURO. and RHEUM.,Internal MED.)send me back and forth.
My hands are very damaged. In 2007, I was told by top specialists that my hands looked 87years old on X-RAY (I was 34 then). Since Oct. 2010, I’ve been having bouts of various kinds of tendonitis mostly in my hands and arms. Maybe I should say “mostly recognized in..” However, even when the pain, swelling,and tightness from the tendon in my finger landed me in a speciality hospital 3 hrs. away. No one once said that it could be tendonitis related to RA (I’m sero-negative). I even developed nodules on my finger and hand (only some along tendons). At the time, it was a great mystery. I was seeing hand specialists at the time. Now I’m surprised that no one suggested that I was experiencing an active, more aggressive flare. I think they did bloodwork while I was in the hospital and dismissed RA.
Last week a new doc. told me that :”You have really aggressive arthritis in your hands. It’s unusual for anyone to have such aggresive Osteoarthritis in their hands,but RA doesn’t attack the hands.” When asked about the ability of RA to attack any joint, I was told “RA doesn’t typically attack the hands.” How do you get a doctor to recognize that RA can attack the hands? I had forgotton Doc.s tell me this. Hmm… What to do?…
I’m praying that my new Rheum. DR. will be willing to do ultrasounds, CT scans , a bone scan, or a biopsy (I would even have my synovial fluid tested in order to be treated). I don’t want to have to merely “survive” every day. Living takes alot of creativity already. Right now, RA is affecting my hands and arms, my voice box, my eyes, my feet and legs, and I believe arthritis in my C-spine has become worse. My Migraines have been worse (overpowering), and I found a record of mild arthritis in my C-spine from years ago. (thank you for listening to me moan)
Thank you are for sharing. It’s so nice to learn that I’m not so unusual after all. It’s also nice to be able to share and know that what I share is understood, and not doubted a bit.
Praying that Doctors everywhere will Recognize and Accept sero-negative RA : AND be willing to Treat it. 🙂
May God Bless You and Yours,
Give You Peace to Get Thru the Night,
Strength for Your Day,
And Love for Every Moment of Joy or Trial.
Michele’
That seems really odd because my rheumatologist looked for RA exclusively in my hands and feet and because I didn’t show signs of inflammation on PE she would dx RA, she even did X-rays looking for damage that she couldn’t see on PE! My pain is in large joints that don’t show swelling easily, hips, low spine, shoulders and elbows, she was not happy with this! You need to see someone else which is what I am finally doing too!
I was very encouraged to read this as I am one of those RA stepchildren. I am seronegative and never have had abnormal labs but have been fortunate that my rheumy decided early on to treat aggressively my symptoms instead of my labs. I would imagine the fact that I am a physician as well played some role in her decision. It continues to frustrate me how little the medical community understands about this disease. I am as well one of those patients whose joints don’t “follow the rules.”. I have pain in many joints including ones not typically involved and have had minimal swelling in mostly knees and ankles prior to treatment. I am also not experiencing a severe course but have had unrlelenting progressive involvement of new joints and have since about one year ago have joined the ranks of those dealing with chronic daily pain. When my doctor asks me how I am it is hard to explain how every day is now colored by how this alters my life….what I can do, how much, how long, and what I do differently….like never try carrying a shopping basket to pick up just a few groceries on those days when I shuffle into the store after work. Since I know I am “good” compared to others, it feels hard to complain. Never mind trying to find out how come this has happened in the first place. With no FH of RA I am rarer indeed. The cause of autoimmune illness is even less understood than the diseases themselves. Patients like me and all of us need to be active in any way we can at helping the medical community understand and recognize our diseases. Speak truthfully any way you can and when you can. My best to all who suffer out there, especially those who have yet to be recognized as suffering.
Emilie Cole, MD
Dear Emilie, Thank you for posting as I know that researchers, physicians, and members of industry do monitor these comments and they need to hear this message. I have spoken with several physicians with RA who have had a similar experience. However, messages are usually sent privately, with a strong request to withhold names.
Our research over the past few years has shown that while most RA patients have been told that they are “atypical,” they are usually not. It is the textbooks that are off base with how commonly certain joints are affected, etc. The Rheumatoid Patient Foundation has published some materials to begin to address some of these issues in the medical community.
Thank you Kelly for all that you do! Also thank you to everyone that contributes their stories as it is so refreshing to know that I am not alone! That WE are not alone! I am positive for RA factor but my CRP levels are low. My family doc is so stuck on my CRP levels, like its the most important part of the puzzle. Because of the RA factor he sent me to a Rheumy and he also is quite stuck on the CRP level! However he thought at first it was RA but just wanted to keep an eye on things, thenhe thought PA and again now RA. But he has delayed treatment for some reason? I was suppose to start DMARDs recently but their was confusion between my rheumy and family doc?? While my rheumy examines me I have obvious pain but little to no swelling. He is concerned about lack of swelling. I have had swelling in behind my knees, a little in a couple of base joints but oddly only on the inside part of my hand, weird? I also had my shoulder get so swollen it was 3x’s the size. The emergency docs didn’t know what caused it, they put me on IV anti inflammatories and pill form for the following 2 weeks. It started to help in about a week. Recently my blood work showed that my thyroid was off hypothyroid wise. My Rheumy was away so I saw my family doc and he wasn’t concerned at all, wants to wait 3 months to check it again?? This concerned me because if something is not working properly in body I think it at least deserves investigation. I don’t need to be put on meds right away but to find out what’s going on that would be nice! So I went a random doc to ask about my thyroid, just out of curiousity and he said yes it should be tested again and scanned to see what going on and that 3 months is too long to leave it! So I have to try to get in to see my Rheumy ASAP to see what he says I guess. Thanks for letting me share and vent my frustration!
Dear Melanie,
I think you’re right that you do not need to wait on either of these things. Unfortunately, you might need to get a second opinion which I know can be time-consuming and expensive. But you need answers and the right treatments. Good luck.
I’m gladiator found this blog. I have a similar story and like you feel like I’m a crazy wimpy whiner that can’t hardly get out of bed anymore. I have had the gauntlet of imaging tests, all normal, yet costly! My RF and ANA blood tests are highly positive, but no others are. I don’t have the “classic” RA presentation so I am a “very perplexing young lady.” I had a pain dr that at least kept my pain under control, but he retired in December, now no one wants to write any pain meds for me without a reason and its 5 months to see the best rheumatologist that my new dr has recommended but has also meanwhile referred me to a pain specialist, physiatrist and now neurologist! I recently just read that my bilateral ulnar neuropathy can be a sign of RA deformity, I have been complaining of that for more than five years and no one f-ing cares, I had to find the correlation on my own! It is so frustrating that it is very very hard to do anything and I wonder why I’m on this earth other than to suffer. This blog helps to see that I am not alone!
Thank you-
Gladiator! I hate iPad spell check! I meant… I am glad I found! Sorry for the ridiculous word intrusion!
Katie, I know your frustrations first hand. Hopefully your new Rhuemy will be Great like mine. She does the tests, but relies on her knowledge and what she sees. She understands that the tests aren’t always the only factor in RA diagnosis. She started me on MTX right away and now on Cimzia, a biologic. Both are helping some. I am learning that this RA road is a long, painful, depressing road. People give endless advice, Dr’s think we’re crazy. Friends and family avoid us. This RA Warrior blog helps, I thank Kelly daily. It at least gives us all a chance to meet others that are in the same boat. We share ideas, hurts, victories. Good luck to you. GENTLE HUGS, Rebecca
Has anyone had a VECTRA blood test done? It supposedly measures the amount of RA activity on a scale from 1-100, higher being most severe. My doctor swears by this test. I’m not so convinced. My symptoms have been AWFUL, but since I’m “only a 29” he doesn’t see how I’m feeling so bad and just blows it off. I have no faith in any lab results. I was told for 2 years that I didn’t have RA because my RA factor was negative and still is. It was diagnosed by MRI. My worst symptom is fatigue and flu-like symptoms. They happen every day, especially in the late afternoon. I just can’t seem to get my doctor to listen. I’m on sulfasalazine, plaquenil and venaflaxine. I can’t take methotrexate. I feel like He just thinks I’m whining or crazy!
Claudia,we do have some posts on that discuss the Vectra test – you can search Vectra in the searchbox up in the right top corner of the page. It is a good tool, but there is not yet a blood test that shows RA or RA disease activity in every patient with RA. The most specific blood test for RA has been the anti-CCP, but there is a new test I wrote about here the other day too: https://www.rawarrior.com/new-blood-test-for-rheumatoid-arthritis-14-3-3eta/
Also, if your doctor thinks you’re whining or crazy, it might be better to have a different doctor anyway. I’ve been there so I know that’s easy to say & harder to do. Good luck.
been there…
I had to be very pushy with my docs to trust me there was something wrong with me. after receiving the diagnosis, they all said I wasn’t the typical patient that behaved “by the book”, because I had almost normal ESR and CRP, negative RF, positive and negative anti-CCP in two different tests… and still I suffer from RA.
and I wonder.. what if there’s NOT a typical patient? it just seems most of the patients are A-typical!! and the fact doctors are looking for a lot of indicators to behave “by the book”, and they just end up sending a lot of patients home undiagnosed, helps underestimate the proportion of atypical patients.
that’s why it’s so important to raise awareness.. being informed about all the tests that need to be done, what they mean, etc. getting at least a couple of oppinions if we think something is just “not right” with us…
I wish i had found this ten years ago. I was told i had fibromyalgia 11 years ago. I had a very positive ra factor of 250 but because my sedrate was ok and i didnt have visibly swollen joints they said it was not ra. Over the years the pain has gotten worse. I have been to about 5 different rheumatologists. My crp level finally became high and now they say i am ra positive and are starting me on plaquenil. At one point the pain was so bad that i told the md i would rather be dead. My daughter has very visible redness and swelling of the joints but her test was negative. My latest visit to the doctor wasnt even for myself but to find the family link to help her. After reading this I would like to slap the crap out of the rheumatologist that i visited in the past. My pcp from when i lived in virginia was the only one to doubt the rheumatologist. He told me he didnt think it was possible to have a value as high as mine and not have ra. I saw the PA on my last visit to rheumatologist and she said that she had never heard of a level as high as mine refering to ra factor. I am glad I found this site to educate myself.
After years and years of normal crp levels mine is finally high. By now my ra factor increased to 580.2. That is 4142% of normal.
Your article has been very helpful. I have a family history of RA on the maternal side. I have been experiencing increased joint pain, muscle spasms in the legs. I also have had an elevated WBC and CRP on multiple tests over the last two months. My doctor is sending me to the Rheumatologist because we suspect RA.
I had a blood test to determine whether I had the RA factor. I came back “normal.” However, the sports doctor and the spine doctor adamantly stated that although the RA factor wasn’t there, they believed that I fit the profile of having the disease. The spine doctor put in a call to the rheumatologist and it took a few weeks to get a call back but that was only because the sports doctor pushed it and said it was a need that needed to be urgently taken care of.
This confuses me because although I hurt on a daily basis and my hands swell, the pain I have is nowhere near what I had two years ago. I felt like my back was breaking into pieces.
I keep hoping it is something else. I know that even if it is RA, I will be OK. Just won’t be able to get back to my old self.
Is there any other blood test that they use? If so, what is the accuracy rate on those tests?
Thanks!!
This article speaks to where I am right now. Only my inflammation levels report high on blood tests, usually around 25. I have been on MTX and sulfasalazine for over a year and it has begun to fail. When I talked to my rheum. about changing meds she became defensive. She reminds me that she has no objective proof that I have RA only my word that the meds help me. She has never seen me without meds since I came to her after my other doc closed his practice. Now she wants me to wean off the MTX and wait for a severe flare to do more blood work! Then if that doesn’t show her the proof she needs, she wants me to go to Baptist Hospital in Winston Salem or Duke University Hospital in Durham, NC, two tertiary care facilities for a second opinion. She bases this on the premise that I don’t LOOK like someone with RA because I don’t have enough swelling or the hands of an RA patient. Because it has always been my knees that are the worst. Now it is hurting in my ankles a lot more than before and in my hands and elbows and shoulders. When I told her about following this sight, she almost rolled her eyes in front of me. Let’s just say I’m very discouraged and I drive an hour to her office because there is only one rheumatologist in my county and he is always overbooked.
I have all of these symptoms, progressively worse in the last three months. All of my bloodwork is “normal” but my ANA is off the chart. I have swelling in my joints, but I’m overweight—which I think makes it difficult for my doctor. It also makes me feel incredibly stupid at my visits. I was thin, a runner, until the pain started two years ago and the first rheumy said I had fibro and was depressed and put me on prednisone for a solid year. Now, my joints are worse. I have all kinds of cysts. My arms go to sleep at night. I can barely walk. I’m considering a cane.
The new rheumy decided to start me on Plaquenil despite the “normal” bloodwork because I came in with photos of Raynaud’s episodes in my fingers and toes. I have at least three attacks a day no matter what I do. I’ve been on Plaquenil for two months. The dentist diagnosed me with peridontal disease…I’ve never had dental problems in my life.
And, I just turned 36. I’m thinking about purchasing a cane…but most days I want to cry because I just want a definitive diagnosis. I know what it is. I have every RA symptom you can think of.
Christina, I wish I could say something to make it easier. I can say you’ll probably have some much better days – RA tends to be worse and better at times in most people. And finding the right treatments for you might also make you feel better – although yes, seeing all these doctors can be exhausting too.
Try not to let anyone make you feel stupid. None of this is your fault. Swelling is such a funny thing. Doctors can look at an overweight person and see it or not see it – and the same thing happens when you’re very thin – the doctor says “o gee my wife’s feet are fatter than that! You consider that swollen?” and it’s so embarrassing to stand there looking down at hands or feet and knowing they don’t look like they did before and that they do swell, and that they don’t work right – and you can’t prove it.
Hang in there.
YES, YES, YES!! you are so right!
one of my shoulders is always slightly swollen but the Rheum Dr is always so darned polite when he examins me, he swamps me in this giant gown and you cant see anything!
What I need is for him to look at me straight on wearing just my bra with my hair tied back but its as if he’s too shy to look! Madness or what?? haha! I mean for heavens sake do I really have time for niceties when im in this much pain all the time..?
I am having an opposite problem. My blood tests are all normal except a very mild CRP elevation I’ve had all my life. A very distinguished rheumatologist diagnosed me with RA based on a very detailed, specific set of symptoms and physical exam observations. But it is ME who is refusing to accept it without positive blood work! It helps to read that basically 1/3 of RA patients have normal blood work, which is what the doc told me also. There are so many observations by other docs and myself over the past several years that all suddenly make sense with an RA diagnosis, but I guess I’m in denial. I keep trying to find some other explanation.
Mine are normal but low positive rheumatoid factor.
I sometimes question myself as to the possibility that I might be a hypochondriac, I feel like im wasting the NHS time and money every time tests come back low or neg yet I am in such a definitive pattern of pain and flare, I can set my clock to my damn menstrual cycle, dunno why but that plays a huge part in it.
Spoke to rheumy nurse today as me latest period ending hasn’t brought the usual bit of relief that it normally does and im stuck in a prolonged state of flare 🙁
I was told to stop taking hydroxychloroquine as it isn’t proving effective and to continue with painkillers till my next app, 3 months away…owwch!
The rheumy Dr says he will consider methotrexate?? when he see’s me next. As im 28 and potentially have quite a few yrs left to live im quite in fear about the consequences of all this and the drugs and what on earth is going on with my silly body! I don’t want to live till im 60,70 or 80 like this.