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Confusing Results from New Rheumatologist
3 Replies
vavaughn - March 25

First and foremost the good news -- it is not lupus which I was convinced it was. I also tested negative for RA. However, my rheumatologist is very surprised that I tested negative for RA because my inflammatory markers and sed rate are both high.

These two tests indicate that I DO have some form of inflammatory disease but it is non-specific. The solution the rheumatologist is trying is putting me on 12 days of prednisone and will do my blood work again. If the markers respond and start to go down then she will treat me as if this is RA or an inflammatory muscle disease and get me on a RA medication.

I know there is only so much they can do but I don’t know how I feel about this approach. Has anyone else experienced odd results to blood test but not have a doctor be able to tell you what it means? Did you move forward with their suggested route of treatment even without a solid diagnosis? What were the results of the course of treatment or not doing the course of treatment? Sorry, so many questions but as we all know, this process is frustrating.

As if having fibro and all my other alignments isn't enough, I have to have one that no one can define and of course that added stress just compounds my current flare-up. What a vicious cycle we are stuck in!


lucky13 - March 25

Has your Dr done any x-rays, RA can show up there.
I recently had bloodwork and also have an inflammation marker come back high, but it could be other things including Celiac disease, inflamitory bowl disease to name a couple since you know it's not Lupus. Also sometimes if you have some type of infection inflammation markers can show up.
My DR is waiting 3 months and retesting my blood before going on further. Do you know what blood test actually came back? Some can also indecate possible heart disease.
If there is nothing pointing to RA, it may not be RA.
I am going to a new Dr in may to get a 2nd opinon on my bloodwork and my treatment options.
Good luck


vavaughn - March 25

lucky13 -- Yep we did x-rays. There is arthritis in my ankles and knees. The rheumatologist said that one ankle is showing some possible damage, which could be RA related.

I did not realize that inflammatory markers could indicate so many other things. I am having my PCP, who is very good, review everything from the rheumatologist.

Thank you for the information. I wish you a painfree and relaxing day!


fibromite.u.k. - March 25

Hi, I also have a similar situation. I have had many blood tests done that show no rhumatoid factor, even though I have marked imflamation and damage to my toe joint. However, I have recently seen a new rhuematologist who is being very through. She says I have many, many symptoms of RA, it is even showing up in my fingernails apparently. She said that in about 20% of people RA doesn't show up in the blood and that doctors use their findings to diagnose it. I have to get my eyes checked throughally and if they are ok, then she is going to put me on a RA medicine.



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