NEGATIVE RF AND CPP

Hi!

Was diagnosed with RA close to a year ago.

Inflamation constant highs: CRP=27.90 last BT.

Rheumy hasme on Plaquenil, Salazopyrin,Prednisone.

(stopped MTX due to side effects.)

Blood tests results show sero-negative RA.

Negative RF.

Negative CPP.

Clear x-ray results.

So how can I be sure this is actualy RA???

All symptoms point to RA-except the afore-mentioned test results.

19 Replies

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  • A diagnosis of RA doesn't just depend on one thing, like a blood test result, but the doctor's assessment of your physical signs and symptoms, how you describe how you're feeling and the blood results. It's a mix of science and experience.

    Both the RF and anti-CCP test are for antibodies, not the permanent presence or absence of something like a broken bone. Antibodies can change over time so if your disease is better controlled it is possible that your body has stopped producing the antibodies.

    And x-ray being negative is merely confirming your lungs are ok, as it is a check that the RA isn't causing damage not a confirmation that the RA isn't there.

    Over the years I have from time to time convinced myself that the RA has burnt itself out. Each time I've started to drop doses of drugs (in discussion with my rheumy) and each time it's shown that the RA is still alive and well....

  • Thanks for your reply.

    You said: "x-ray being negative is merely confirming your lungs are ok"

    The x-rays that were done were looking for erosion/ wear of the joints.

    Wrists, knees, fingers, hips& spine

  • X-rays do not unfortunately tell the whole truth, especially in the beginning. If you want to see early RA changes you should take MRI and US.

  • Duh! Stupid me, I read "chest x-ray" rather than "clear x-ray"! But same applies to all other joints too.

    Yes MRI and ultrasound are more revealing, but unlikely to be offered them in the U.K. unless a specific concern identified. I think Simba is in France where the cost constraints are less. But always worth asking! In my last year with UK rheumy she did have access to a portable ultrasound that she did use from time to time. (With my French rheumy it sits beside her desk and she uses it at every appointment...)

  • not in UK OR France....lol

  • Nice to have a range of origins on here....

  • Helix hope this is not a stupid question - can you have an ultrasound on your chest instead of an X ray? I am suppose to do a chest X-ray but haven't as yet. My Rheumy is doing a Ultrasound on my feet this Friday I was thinking of asking him to double up and do both.

  • You can, as in it's completely possible. Whether it's best to use that rather than X-Ray really depends what you're looking for. X-ray gives more detailed pictures, whereas ultrasound is a bit of a murky blur and depends much more on a skilled operator to interpret. It's also not very good at looking at things that are full of air, like you lungs, but it is better at highlighting inflammation in soft tissue.

    My experience is that being efficient and doubling up is something that isn't taught to rheumies......

    Edit - just looked at your later answer and if the chest x-ray was in preparation for anti-TNF then they will probably prefer an X-ray as better in showing up potential lung things.

  • Thank you Helix - You are fountain of knowledge! I had the chest X-Ray today, Ultrasound on feet and ankles tomorrow.

  • What other symptoms? What was your Sedrate? It's also true that diagnosing RA is not always so easy, so many other conditions may have the same symptoms.

  • Sed rate was high.

    Symptoms: morning stiffness and pain that last through-out the morning.

    swollen, painful hands & wrists.

    bad hip pain

    even had aching toes!

  • High WBC & neutrophils

  • Your inflammation markers show that you have an ongoing inflammation or infection. Your symptoms are typical for RA but hip pain and negative CCP could point in the direction of AS. Reactive arthritis cannot entirely be ruled out eather. Have you looked into Roadback Foundations pages about Minocycline treatment, an antibiotic treatment that has helped many. Funny with seronegative patients, so often seem to react differently to RA meds than seropositivešŸ¤”

  • What is AS?

    And Reactive arthritis?

  • spondylitis.org/Types-of-Sp...

    Here is in short information about both of them. Hope of some help.xxSimba

  • Hi - diagnosed Nov 16 - my ESR 21 and CRP 29. CCP was 211 ouch šŸ˜¬ So defo RA. This test is the deal breaker. My identical twin was advices to have the CCP her result was 0.7. I have been told I will be on anti-TNF injections just after June. Looks like remission is not happening sadly. The inflammation mainly sits in my ankles / feet and caused damage mainly to those joints. As said make sure you do the CCP.

  • I did the cpp. Results were normal

  • I would keep asking questions of your rheumatologist. I also was labled sero negative RA, hemoglobin very low at 100, crp 152, negative rheumatoid factor. They are not thinking along the lines of Lyme, Still's, and Castleman's disease. I am off all DMARDS, prednisone and such. I am now on Actemra, it is an IL6 biolgic. One week after my first infusion my crp went from 152 down to 1.7. Then after the second infusion (this january 3) crp was less than 0.2. So now that it is under control, hopefully my body will begin to heal.

    Do you have any unexplained swellings? Like enlarged feet, knees or anything?

    Scott

  • The only swelling I get is my hands

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