Rheumatoid factor finally high - what happens now?

[Katt]

Hi All, I have been having joint pain and stiffness on and off for over 10 years. Over this time I have been checked various times for rheumatoid arthritis as it is in the family but my results have always been negative. Two years ago I was referred to a rheumatologist who after many tests which all came back negative diagnosed me with fibromyalgia and discharged me. About 2 months ago my joints were so painful and many were swollen for the first time. My GP ran all the blood tests again and told me that my rheumatoid factor was high. She said she would refer me back to rheumatology but not to expect a diagnosis as my CCP and ESR results were negative and rheumatoid factor on its own is not a definite diagnosis of rheumatoid arthritis. Obviously I do not want anything wrong with me but I am feeling very confused and frustrated now. Has anyone else been diagnosed with just a high rheumatoid factor but no other positive blood test results? I am desperate to have some answers to the constant pain I am in. Thank you for reading.

[sylvi]

Kat i am sorry your suffering like this. I have ra and a low esr crp score yet i still get pain in my hands where it started. Ask your dr to refer you again and get him to supply you with your scores from your blood tests and letter to take with you. Best of luck.xxxxx

[DelicateInput]

I would have thought you needed other tests before RA could be ruled out.  I had x-rays, ultrasound and an MRI which all showed up defects (synovial thickening).

A lot of people have high inflammatory blood levels and rheumatoid factor but they don't have any symptoms of RA (ie they don't have RA).  Sometimes they are just obese.

I think I would ask for a second opinion rather than go back to the first doctor.

[Ganit]

Hi Katt, all my tests came back negative, apart from my ANA test which was a low positive. I was lucky they sent me for an ultrasound of my hands which showed up synovitis and when i went back to see my Rheumatologist my pip joints on my fingers were swollen and tender. My ESR and CRP tests are always negative, so please don't give up, i would have thought with your symptoms and a positive RF that would have been enough, surely!!!

Ganit

[Damaged]

Have you scene the new test available called Jointstat ? It is based on a new protein 14-3-3 eta . It is far more sensitive in detecting RA. Maybe that will help. My heart goes out to you. I was sick for years before I got my diagnosis. I literally had to force my GP test me. He did the usual it is this take this pill. I could no longer walk so all levels were off the charts. My Cyclic Citrulinated Peptide was 300. With this test three is high. Now when they refer to seropositive RD they are referring to CCP. Have they run those tests yet ?

[Katt]

Thank you for your replies and advice. My CCP was normal. I have just requested and had a blood test for the HLA B27 gene to test for psoriatic arthritis and spondylitis as I have really bad lower back issues. Last time I went to see the rheumatologist she was very thorough and did x ray of chest but didn't get any x-rays or ultrasounds of joints. I am hoping this time she will as I have definite swelling in them now. I keep reading the earlier they detect RA the better the prognosis so I am concerned that I have been suffering from joint issues for over 10 years on and off. Like all of us I am desperate for some answers. Thank you for reading 

[flow4]

I think with a positive RF test and painful, swollen joints, your diagnosis is likely to be RA. I recommend taking photos of your swollen joints now, because joints have a funny habit of NOT being swollen when you finally see the rheumatologist!

By the way, just so you know, HLA B27 is not a fail-proof test for the spondyloarthritises; if your result is positive, it means it's almost certain you have one of these, but if it's normal, it doesn't rule them out.

[Poogles]

Hi Kat, I am same as you. I thought I’d had a stroke in December. Long story short I tested positive for Lyme disease .After three visits to Infectious disease clinic they sad it was a false positive.

I also had an elevated RF so today I went to Rheumatologist. If I was in there for five minutes He looked at my blood tests from December and my ESR is very low and Anti CCP was negative so he said three times I do not have Rheumatoid arthritis.

I was so mad. I have joint pain and stiffness and have massive flair ups where I can’t do any housework. I feel really poorly when I have these flares and have exhaustion aI don’t know where to go from here.

December

[Twoplustwins in reply to Poogles]

Hello, I know this post has been some time ago. How are you feeling? I found a Lyme Disease specialist and had a Western Blot test with positive results. Thing is, you have to score positive on two specific antigens out of five (or something like that) to be considered positive. One of the two antigens that I was positive for happened to be the same antigen that the vaccine was made with. So, you could also test positive to that one antigen if you had the vaccine. My results said, "Positive but not CDC positive." They explained that even though I know I did not have the vaccine, the CDC would not record it as a positive test just in case I had the vaccine. My Lyme doc said it was positive and started treatment. I had been very sick for a year and misdiagnosed with a myriad of things. Since Lyme doc was 3 hours away, I brought results to an infectious disease doc at the local teaching hospital. He refused to treat me because he said "It says right here that you are not CDC positive, ergo you are not sick with Lyme Disease." Not sure if this is what happened to you or not? But I urge you to seek another opinion if you are still ill and do not know what is causing it.