Testing Negative for RA - frustrated | Arthritis Information

I am soo frustrated tonight. My husband has been suffering with severe joint pain and swelling, along with fluid in his elbow joint, now severe leg edema. However, after every blood test know to man and xrays, etc. etc. The blood tests are negative for RA and/Lupus, and xrays show nothing. However, you can look at his joints and see the arthritis, and they all joint hurt just to the touch. THe edema is new about the last 30 days, lasix (water pill) not helping, now trying compression sox. We are being sent to an RA specialist in 3 weeks for the 2nd time. The first Rhuematologist gave up, and said he was negative for RA according to blood work and xrays, but he could tell he has some form of arthritis by looking at him. I guess he did not have the patience to diagnose him correctly and has sent us on to another RA doctor. I don't understand why the blood work and xrays are negative when you can see his joints are swollen and he is in pain 24 hours a day and the swelling in his legs are getting worse. Can he have RA and still test negative with blood work and XRAYS? Is the leg swelling part of RA ? Just because they cannot diagnose him can't they treat him? or begin treating him for arthritis?I wonder why he sent your husband to a different doc? Maybe he thinks it is more something the other doc has a specialty for?

Auto immune disease often does not show up on bloodwork. So sure they will treat him regardless of his bloodwork. You may have to wait until he sees the next doc.

Please let us know what the next doc says?

Hi Dianna,

The short answer to your question is "Yes"!

I am RA negative by blood tests, and yes, you can indeed have RA without conclusive blood results. There are other factors that a good rheumatologist take into consideration that can lead to the diagnosis, including a physical examination and medical history.

This is called a clinical diagnosis, and one dictionary definition for this is "a diagnosis made on the basis of knowledge obtained by medical history and physical examination alone, without benefit of laboratory tests or x-ray films".

There are many people on here that are RA Negative (that shows no RA Factor in the bloodwork)! I was diagnosed by clinical diagnosis as I have no RA Factor. But my bloodwork results did show inflammation, which led my GP to send me straight to the specialist Rheumatologist!! I think that perhaps the only benefit of an RA Factor in the blood means probably a quicker diagnosis for some. There are a lot of types of arthritis that can show similar symptoms, so can sometimes take a bit of sifting through.

If he does diagnose RA, I would hope that a good RA would get him started on something that will at least reduce inflammation and his pain levels quickly, while working on finding the drug mix that is going to help prevent damage. I was started off on a high dose of Prednisone, for the pain and inflammation- with Methotrexate, Placquenil & Folic Acid. The Methotrexate takes usually 6-8 weeks to kick in, and then the Spec. began slowly reducing the Prednisone dosage. (A different diagnosis from RA though, would probably mean a different drug regime - but I don't know what that would be). But they do know their stuff!

With RA, the pain is the same, usually bilateral, the damage can be the same, and the treatment plan the same, whether RA Positive or Negative. Each treatment plan, drugs etc, is individualised, the same drugs do not suit everybody, so sometimes it can be a matter of trial & error until the right mix is found.

And yes, swelling around the joints can definitely indicate RA. I hope that you are able to get a better picture and get some answers for your husband from your new specialist. Roll on your next appt!!

Good idea to keep a record of everything thats happening for him over those weeks until your appt, diarise pain on a scale of 1-10 perhaps, morning stiffness times, any little thing that is giving him a problem.. And any questions! Take it with you to the appt, it's amazing how much we forget to tell them when we finally get there! A good Rheumatologist will ask you the right questions, and will listen!!

I'm sure others will add to this, we've all been there! All the best, and keep us posted!!

Kiwilass22011-04-12 23:15:18Hi Dianna - I have been diagnosed with RA for over three years now. When it all started with me I had gained about 10 pounds within a couple of days. I knew it wasn't from eating. However, I started with what felt like fluid in the back of my knees because I couldn't squat. Then I noticed some swelling in my knuckles and across my toes - well, the joints where the toe connects to the foot. I also then had pitting edema in my lower legs. My GP first tried Lasix but that didn't do anything either (like your husband). I then went to a rheumatologist. He did blood work and my sed rate and c reactive protein and aldolase levels were all elevated, but no RA factor. Anyway, I was put on 20 mg of prednisone which was a miracle. Within one week those 10 extra pounds of extra fluid were gone. However, it took another two years of prednisone, plaquenil, methotrexate, and humira to get it under control. I eventually weaned off of the prednisone but haven't felt as good since then. I go back to the doctor tomorrow so we will see what is going on. Anyway, I am not a doctor, but I think prednisone would take the edema away for your husband. Like others have said, you don't have to test positive to have RA - many don't or they don't test positive until years later. Good luck. You just need alot of patience with this stuff!!Thank you for all of the information, My husband not only has tested negative for RA factor but his sed rate is not elevated. In other words, the family doctor says he cannot clinically, with tests find anything leading him to arthritis, but you can look at his joints, and see how hard it is for him to get around, his knees hurt terrible and the leg edema is soo painful. His hands are killing him with pain, and now they are tingling and going to sleep periodically. The family doctor says to examine him your would say its some form of arthritis, but no blood work shows any indication of it. We have an appointment in 5 days with a RA doctor, lets hope he can figure this out. This has been a nightmare for the past 90 days - 6 months.

Well, I wish you and your husband a quick resolution. I can't believe no one has tried him on prednisone. No one should be suffering as long as your husband without some type of a treatment - shame on his doctor. That's terrible. I'm sure hope the RA doctor believes in "not suffering." When I showed up at the rheumatologist's office for the first time, he took one look at me and said, "Don't worry, we will give you something before you leave!" Your husband should never have been suffering this long. My best to you all. I have had RA for over 30 years. I still test negative for ra factor. It took about 3 years before x-rays confirmed the RA diagnosis. I was treated long before I was offically DX'd.

Ask the RA doc for prednisone. If he says 'no', ask him to please treat you.Hello
just wanted to share that I have had RA symptoms for several years with all inflammatory markers in blood work being negative: anti-cpp, ENA, ANCA, CRP, ESR, RF. I also saw 3 rheumatologists who each said they couldn't put me on DMARDs bc my blood work and X-rays were clean. I finally get a rheumy who saw how much pain I was in and the amount of swelling I had. He said he was there to treat me the patient not my blood work. I am now on prednisone, MTX, Actemra, plaquenil & Lyrica for my seronegative arthritis. Despite no inflammatory markers my RA has been declared severe and atypical. Don't let blood work hold you back from getting necessary treatment, The longer the symptoms persist without medication the harder the disease will be to manage in the long run due to possible joint and tissue damage. Keep pushing and good luck.

Yet another sero-negative RA sufferer. I have no blood markers.. I never did.. not even as a child of 10 years.

I needed a doctor to diagnose so that I could get the meds! and relief! my RD tested me and tested me.. no results showing the disease... I showed up at his office in a horrible flare and he took me right into his exam room and drew fluid from my knee ... observed it under his microscope and also sent to lab for eval.... but he came back to me and said: We HAVE a diagnosis..

Find an RD that will keep looking for you.. keep trying.. it's there.. it's discoverable... he/she needs to keep on looking.

Good luck to your husband and yourself.