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Wondering if I really have RA?
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An_254607 posted:
I have had persistent joint pain in my knees, wrists, and shoulders for 3-4 years. I am 31 years old. I was tested for Lyme Disease 2 years ago after complaining about it to my PCP, it came back negative. About 3 months ago, I had an MRI for a lump on my wrist (family hx of rare carcinoma), and the oncologist told me the scans looked like I had a lot of swelling in my wrist, characteristic of RA, and he suggested I see a rhuematologist. I had blood work, came up negative for RF factor and all my other levels were normal. I've been on prednisone and had dramatic improvements in my joint symptoms. My rhuematologist believes I have sero-negative RA. I took Sulfasazine, and was allergic to it. The other options we talked about were Methotraxate and Hydrochloroquine. I am so uncomfortable with the idea of taking either...and terrified of side effects. I have been researching alternative treatments, have switched to a vegan/gluten free diet, and am looking into acupuncture and yoga therapies. From what I understand, not many people come up negative in blood tests AND show no signs of joint deformity, and still have RA. Is it possible I have inflammation that is causing joing pain, but is not RA? Maybe a food sensitivity or lack of exercise?
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volusiagirl responded:
I tested VERY high on RA factor and SED rate the first time I had my blood tests after 3 weeks of such INTENSE pain that I couldn't sit/stand/walk/lie down, ANYTHING without crying with pain. I started a regimen of methotrexate and ALL those others for months, to NO avail. The only one I worried about was plaquenil which is really hard on your liver and kidneys.
Prednisone is the wonder drug of the ages for almost ANYTHING to do with joints and ligaments, etc. IT IS one of the worse drugs for side effects that I've ever taken too!
Point of my replying is this : Ever since I tested extremely HIGH on all those initial tests in June of 2001, I have NEVER shown ANY indication of RA since. I have all the really bad joints, both knees replaced and 4 fused lumbar vertebrae; disfigured fingers, wrists and hands... but if you test my blood today, there will be no unusual SED rate or RA factor at all !!
 
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allie_bf responded:
Rheumatologists are usually pretty careful about diagnosing RA, you'll find many people who are sure they have RA, but are still waiting for a formal diagnosis, so if you're doc is sure, he/she is probably right. It certainly is possible though to have other forms of inflammatory arthritis that aren't RA (e.g. arthritis can be seen with lupus and Sjogren's Syndrome.) A lack of exercise or deconditioning would not really look like RA, and the lab results would not be suspicious for any type of inflammatory arthritis. If it's seronegative arthritis though, at least you can feel a little more comfortable about having a lower risk of serious joint damage and deformity than those folks with the seropositive type, but there is some risk so abandoning all of your conventional therapies in favor of alternative treatments is probably unwise. Continue the yoga, acupuncture, etc., but as an additional form of treatment, not a replacement. Plaquenil, by the way, is probably much safer than long term prednisone, and is worth a second look. Yearly retinal monitoring is strongly recommended, but my eye doctor said he's not seen anyone with complications in his last 15-20 years, and he sees a lot of arthritis patients.
 
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recoverybug replied to allie_bf's response:
Hi, I was diagnosed with seronegative rheumatoid arthritis and was told that it is and can be just as damaging as someone that shows the positive factor. In fact I my doctor says I am moderate to severe and wants to start me on Remicade infusion treatments. Which is got me a little scared. I just got use to doing my own methotrexate injections. lol! But I have been treated and diagnosed with so many things that I guess I feel that maybe I am going to endure more pain by going through treatment and it not work or help me either. I do have a lot of other problems with my neck and back that cause me pain too, including Fibromyalgia. I have been through epidurals, ablations, even a spinal cord stimulator only got get no relief. So that is where my doubt comes in. But the side effects also concern me.
But I just wanted to let it be known that seronegative can be just as damaging as a positive factor. I have quite a bit of deformity already, in my hands, wrist, feet and ankles. I was diagnosed by my x-rays.


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