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Real members of myRAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myRAteam Member asked a question 💭
Granbury, TX

I have had a high RF in the 120 to 140 area for over 14 years. It started out at 40 and it fluctuates between 70 to 147 or so. I've been told by 5 Rheumatologist that it is fibro not RA. Now my right foot is deforming at the second toe and my left is starting to also. I see another Rheumy on Oct 31. I'm scared I'm going to get the same treatment as before. Has anyone else been down this path of just having The RF high even when having a bad flare up. The xrays show bone spurs, and the… read more

September 27, 2018
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Answer Summary

Members rallied around someone frustrated by 14 years of elevated rheumatoid factor levels and worsening foot deformities, yet receiving only... Read more

Members rallied around someone frustrated by 14 years of elevated rheumatoid factor levels and worsening foot deformities, yet receiving only fibromyalgia diagnoses from five rheumatologists despite visible joint damage. Several members urged the person to request the Anti-CCP antibody test and Vectra blood test, which measure disease activity more accurately, and emphasized that many people have seronegative RA where standard labs appear normal but symptoms clearly indicate the disease. A recurring theme was the importance of self-advocacy, finding a rheumatologist who listens to symptoms as much as lab results, and not giving up until receiving proper treatment, especially since biologic medications can be life-changing.

A myRAteam Member

I recently changed rheumatologists due to relocation. My new doctor ran a battery of tests like I've never had in the last 20+ years with RA. One of those tests was a Vectra blood test. It shows the level of disease activity. I'd never even heard about it before.

I agree with the comment above that a good rheumy will listen to you and believe your description of what's going on, history with symptoms, etc as much as just look at lab results. After all, a lot of people with a negative RA factor still get diagnosed with RA strictly due to symptoms. Stand your ground! Keep advocating for yourself.

September 27, 2018
A myRAteam Member

Some
People are seronegative. The RF and Ccp are normal ... or one shows up & other doesnt. For a long time i felt i was... i always have a normal RF, but recently ive had a positive Ccp. My esr and crp always are high. The big key was the Vectra test. That was amazing to see my score for disease activity. It was a big factor in my diagnosis. Check that out! Otherwise- keep fighting!! You can have RA but have negative results. Wish u luck ! Xox

September 27, 2018
A myRAteam Member

Hi Marci,
Have you had the Anti-CCP antibody test? It is much more accurate and specific for RA.
Don’t give up on the things you love! The biologic meds are a real difference maker!
Best of luck with your new Rheumy!

September 27, 2018
A myRAteam Member

Have they done anti-CCP? There are more tests now. Some are more expensive and avoided. Given that fibro involves muscles and RA joints and more, I would thinks it's RA. My dad couldn't get a good diagnosis until his hands were terribly deformed. I hope your appointment in Oct. provides a clear diagnosis. 💕

September 28, 2018
A myRAteam Member

I don't think there is a blood test for fibro. You should definitely be seeing another doctor. Even if your RA numbers are in the moderate zone, you should have been receiving treatment for RA. Hopefully the new rheumy will help you. If he/she doesn't, then keep trying different ones until you get one who is willing to listen to you and fight to get you out of pain and under control.

September 27, 2018

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