hi new here today. i was dg in 1995 with fibromyalgia after birth of first child. always struggled then after find a great consultant found myself coping and managing life to the best. 2 years ago i experienced something different it took 12months to get back and see cons, blood tests show inflamation but ra is negative, lupus negative. RA is severe in the family - mother and aunty. Now i hear a query on seronegative ra. what does this mean. I have had the worst couple of months with flare ups in right hand and right ankle on 20mg of preds a day plus regular painkillers. Is it true diet can help i find coffee, coke and fish seem to set me off. any advice is welcome cos i'm confused. thanks all reading is a great inspiration
Hi Marie10, and welcome.
It sounds like you're having a lot of pain and a slow route to diagnosis. It's a hard time to go throughl. Unfortunately it's not that uncommon with RA and similar diseases.
Seronegative RA is actually quite common. Perhaps 20% of people who have RA don't have a positve blood test for RA factor. Interestingly, it seems like a lot more than 20% of us are seronegative. We took a little poll on another message board (http://rasushi.jconserv.net/viewtopic.php?t=434) and a surprising number of folks were seronegative. A lot more than 20%!
Also, a lot of people start out seronegative and then over time, say in 6 months to a couple of years from starting tests and treatments, their RA factor (or RF) becomes positive.
They usually diagnose RA more slowly when you're seronegative. Diagnosis is based on a lot of other factors besides having positive RF. They look at blood counts that indicate levels of inflammation, they look at whether your symptoms are symmetric (both hands, or both feet, both knees, etc.). They also consider how long your morning stiffness lasts, and whether the small joints (fingers and toes) are involved, and how much heat, swelling or tenderness they find on examining each joint. It's complicated and they have to rule out a lot of other possible forms of arthritis or autoimmune disorders before reaching a defnite diagnosis.
However, they can and should give you useful treatments even while they are working on a diagnosis. Are you seeing a rheumatologist? That's the most important thing. Have they tried you on various anti-inflammatories or any DMARDs (Disease Modifying Anti-Rheumatic Drugs), like plaquenil?
Yes, it's not unusual for people with RA and related disorders to have certain foods that make their symptoms worse. That's not the case for everyone. And taking certain foods out of your diet, even if they tend to make your symptoms worse, won't actually cure RA. It's smart to find out what you can about foods that might cause you trouble and eliminate them. But be careful of those who will tell you that a matter of diet can either cause or cure RA. From experience of those of who have it, and from medical research, that theory just doesn't hold up. If a food caused or cured an RA-like condition, that's great, but it's pretty sure it wasn't truly RA.
Welcome marie10. I have been Dx'd with sero-neg RA and it did take a while to be Dx'd. I eventually presented with swelling, redness and x-rays show erosion and thinning of the bone. I tried MTX for 4 months with no relief and just started Enbrel this week. I do think that the 20% sero-neg figure is low at this time and it is so hard with neg blood work to get a rheumy to pay attention but I finally found a great Dr that Dx'd based on a physical exam and my symptoms.
I also had Fibro prior to RA. I am mod-severe RA and sero-neg so I think it only means that we are neg for the RA factor. I have not been checked for the factor in almost a year so will be asking the Dr to run one next visit.
Take care and hope you get on meds that help.
Welcome Marie10! I, too, am sero-negative however my rheumy has not given me a diagnosis of RA. She's calling it a sero-negative, RA-like inflammatory arthritis for now. I am on DMARDs (MTX and plaquenil) and am starting to see results. I also have fibro.
I'm fairly new to this and don't have any answers about the food link. I eat a lot of fish so I hope that's not true in my case. I believe it is pretty individual though.
I hope you stick around, the people on this board are awesome! Good luck and again welcome.
Hi Marie, I'm another sero-negative. I was diagnosed just over a year ago - based on lots of inflammation, red, hot joints, symmetrical join pain, etc. Nothing on the blood tests, though. Both my RD & GP took one look at my joints & said it had to be. Some people have a tough time getting diagnosed.