Anyone Seronegative?

By alison123

1 min read

I am new to this site. Still trying to figure out how it works. I am a 54 year old Female. I have had pain since 2013 after many different doctors I was finally diagnosed with Seronegative RA. Is anyone else out there seronegative?

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Tamara Haag Moderator & Contributor
Hi <inline-mention user-id="3112994" username="alison123"/> , Thanks so much for reaching out with your question! Yes, I am seronegative. I was diagnosed in 2000 at the age of 22 after some misdiagnoses. Here is an article I wrote that includes some of the frustrations of having seronegative RA: <a href='https://rheumatoidarthritis.net/living/testing-testing-1-2-3' target='_blank'>https://rheumatoidarthritis.net/living/testing-testing-1-2-3/</a>. Also, here is an article that provides information about seronegative RA: <a href='https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story' target='_blank'>https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/</a>. I'm happy to answer any questions, so if you have any, or if you have any experiences or concerns you want to share, please feel free! I'm glad you found our site, and we are here to help. Wishing you all the best, Tamara (site moderator)
gkparis50 Member
Hi Alison123, My name is Griffin Kate and I'm also Seronegative. I'll be 70 in December and was not diagnosed until about 8 years ago. I've had pain since my youth and it got worse the older I got. I'm in Fl. Where r u? Is that ok to ask?
1. Tamara Haag Moderator & Contributor
 Hi <inline-mention user-id="3170150" username="gkparis50"/> , Thanks so much for sharing! FYI, yes, it is okay to ask others the general area they live in. We do have a community rule not to post contact information such as emails and phone numbers. I'm in Georgia, so I'm your neighbor to the north. 😀 Thanks for being here, Tamara
oprose Member
Probably was. Was dx in2015 with off the chart numbers. We (my rheumy and I) have decided I have had it since at least 1998 but probably before. I had RA tests which didn't show anything and vague symptoms that came and went. Took naproxin for years and it helped some. Now on Methotrexate which is working. I am now 79 and my mother had RA.
1. Tamara Haag Moderator & Contributor
 Hi <inline-mention user-id="3219178" username="oprose"/> , Thanks so much for sharing! That's so interesting that you likely had RA for many years pre-diagnosis but only started showing positive for rheumatoid factor in recent years. One of our contributors had a similar experience that he wrote about here: <a href='https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story' target='_blank'>https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/</a>. I am so glad the methotrexate is working for you! Wishing you all the best, Tamara
blackrhane Member
I was diagnosed with derivative ra in 2018. I'm still somewhat New to it, although I believe it started in 2016, along with my fibromyalgia and other diseases.
1. Tamara Haag Moderator & Contributor
 Hi <inline-mention user-id="3137062" username="blackrhane"/> , Thanks so much for sharing! I'm glad you found our community. We have many people here who have comorbid conditions along with their RA, including fibromyalgia, so we appreciate you sharing as it helps people know they're not alone. If you're interested in reading about fibromyalgia and RA, here is a page with links to some of our articles on that topic: <a href='https://rheumatoidarthritis.net/?s=fibromyalgia' target='_blank'>https://rheumatoidarthritis.net/?s=fibromyalgia</a> All the best, Tamara
oprose Member
I also find it intersting that before I was dx with RA, they found lightchains in my blood that they called M-gus which can be a precurser to Multiple Myaloma. I had my blood checked every 3 months for over 2 years and I saw a oncoligst each time. Several other people I knew or met at the office did develop MM, Mine changed became close to normal and then I developed RA.
1. Tamara Haag Moderator & Contributor
 That is interesting - thank you for sharing, <inline-mention user-id="3219178" username="oprose"/> ! All the best, Tamara
banksy Member
Hi Alison, Yes, I have been diagnosed with Seronegative RA.
suri613 Member
i'm seronegative and also have fibromyalgia. the 2 have lots of overlapping symptoms so sometimes i don't know if it's my RA acting up or the fibro.
1. Mary Sophia Hawks Moderator & Contributor
 suri613, We are twins! It is difficult to know which beast is in flare. I find that if my RA is not under control, my fibro goes into flare also. For myself, I have found that if I get a steroid shot at the beginning of a flare, it is much easier to manage. Gentle hugs, Mary Sophia
Mary Sophia Hawks Moderator & Contributor
Dear Alison123, Welcome! Yes, I am seronegative as well. I was diagnosed in 2005 with fibromyalgia. My PCP treated it for several years. I finally realized that the treatment was not working as well, and insisted on a referral to a rheumatologist. The first thing the rheumatologist said was, "have you not been diagnosed with RA?". I explained that all my tests were negative. He ran them again. Everything was negative, including CPK, CCP, RA, ANA, etc. He told me he was going to keep a close eye on me. At the end of August 2011, I had the worst fibro flare ever. I went to the rheumatologist and sobbed once I got into a room. I spent 4 months on short-term disability, discovered I also had a serious Vitamin D deficiency and carpal tunnel syndrome. In January 2012, I was able to go back to work at a different job part-time. In January of 2013, the rheumatologist said, "If it waddles like a duck, acts like a duck and quacks like a duck, we're going to treat it like a duck!" I started on RA medication that day. In April of 2014, I had a total knee replacement due to a previous injury. The surgeon discovered evidence of RA on the opposite side of the knee from the osteoarthritis. The Vectra-DA test is the only test that has ever shown my RA. As a newbie, there are so many things you will discover. Here are some tips: Be totally honest with your rheumatologist. Realize that treating RA is very individual, and it may take time to find a treatment that works. Always reach out to your rheumatologist if you are not getting results. Be kind to yourself. Realize that you will have to find new routines depending on how you feel. Only compare yourself to yourself, not others. Reach out for help when you need it. I hope you will find this site as helpful as I have. We truly understand what you are going through. Gentle hugs, Mary Sophia, <a href='https://rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> moderator/author
1. qejm0g Member
 Hi Mary-also seroneg, CPK, CCP, RA, ANA, sed rate when first diagnosed in 2009 (except CCP-by today's standards it is considered neg) and continue to be seroneg on all fronts. My research suggests that it could be the immunosuppressant meds that keep all of the markers within normal limits. My private disability insurance company needs validation beyond physical symptoms so this Vectra-DA test is of interest to me. Can you tell me what you know of it? Thx!
2. Tamara Haag Moderator & Contributor
 Hi <inline-mention user-id="3157267" username="qejm0g"/> , I, too, have only seen RA indicated on bloodwork via the Vectra test. I write about it here: <a href='https://rheumatoidarthritis.net/living/testing-testing-1-2-3' target='_blank'>https://rheumatoidarthritis.net/living/testing-testing-1-2-3/</a>. I took it five years ago, and at that time my insurance did cover it, but my doctor said not all insurance does. I don't know how that's changed in the years since. Here is some information from the manufacturer about the Vectra test: <a href='https://vectrascore.com/get-the-test/' target='_blank' rel='noopener noreferrer ugc'>https://vectrascore.com/get-the-test/</a>. Wishing you luck with the frustrating process of navigating insurance requirements, Tamara
judahite55 Member
I am also seronegative. I had to have foot surgery because of arthritis. The orthopedic surgeon suggested I get tested for RA. I did but it didn't show up until the next year after another test.
marilou Member
Hello! I also have seronegative RA AND Fibromyalgia. Female, 70, here and diagnosed in 2013. This is my first time posting also and I have tried for years and could not get registered properly. Someone finally told me to use Google to enter the blog site. I hope it works. I do not fully understand seronegative and I don't know about the blood work numbers at all. I have a sweet RA doctor but he does not readily explain a lot. Maybe he thinks I am too old? I don't have a lot of pain from RA. The fibro is my worst enemy. I take methotrexate 15 mg per week and hydroxychloroquine daily. I just hope you have a good doctor who will listen listen and then listen! Thanks for letting me post finally. Thank you for letting me post finally.
1. Tamara Haag Moderator & Contributor
 Hi <inline-mention user-id="3194743" username="marilou"/> , Success! I'm sorry that you encountered difficulty in posting, but your determination paid off because this did indeed post. Thank you for sharing a little bit of your story with us. The numbers can indeed be very hard to understand. I don't pretend to understand them fully myself. This article explains what each of the standard RA lab tests is measuring: <a href='https://rheumatoidarthritis.net/diagnosis/laboratory-testing' target='_blank'>https://rheumatoidarthritis.net/diagnosis/laboratory-testing/</a>. If you are wanting to learn more, it may be helpful reading. I am also seronegative, and because my standard labwork always "looks good" regardless of how much my symptoms might be flaring, I don't put a lot of stock in the blood labwork. My doctor and I rely more on my self reports of my symptoms as well as inflammation indicated in physical exam and by ultrasound. The Vectra test is the only test that ever reflected disease activity level that felt accurate, and that was only performed on me once. As you shared that you contend with fibromyalgia, here is some information about that: <a href='https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/fibromyalgia' target='_blank'>https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/fibromyalgia/</a>. Unfortunately as many as a fifth of people with RA also have fibromyalgia. That's a tough double whammy. I'm so glad you were finally able to post, and I hope that now that you've got it figured out that you will continue to share with us whenever you feel so inclined. Gentle hugs, Tamara
Richard Faust Community Admin
Hi Alison123. As you can see, you are certainly not alone in being seronegative (it is about 30% of cases). My wife, Kelly Mack (a contributor here), was diagnosed at two, has had juvenile RA for over forty years, and has used a wheelchair since her late teens - every rheumatologist who has ever seen her has said it is one of the most aggressive cases they have seen. A couple of years ago her rheumatologist added a Rheumatoid Factor test to her regular blood draw out of curiosity because there was no record of a test. It came back seronegative. There is absolutely a better need for testing. Kelly wrote here about her experience, testing overall, and the hope for more personalized testing: <a href='https://rheumatoidarthritis.net/living/autoimmune-antibodies-testing' target='_blank'>https://rheumatoidarthritis.net/living/autoimmune-antibodies-testing/</a>. Best, Richard (RheumatoidArthritis.net Team)
javajodi1269 Member
Yes I am I also have Lupus diagnosed 5 months ago
lettie116 Member
Incredibly lucky and thankful! Hi This is my first post. I was first diagnosed when I went to the doctors with what I thought was a spider bite. RA hadn't a notion what that was but boy was I going to find out. My RA is sistemic and very unpredictable. After four years of taking pain killers like smarties trying to curb it holistically and trying numerous medications I now consider myself incredibly lucky I have it under control the specialists found the medication that works for me. Having said that I still get the odd flare, I don't have a huge amount of energy. I rest when I am in pain and I don't push myself if I'm tired I prioritise. Yes I get angry, frustrated and feel guilty, I'm human but I feel better than I have done in four years. I am very grateful!