[Member Discussions and Questions] Do you have Seronegative Rheumatoid Arthritis?

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January 14, 2013

One Chicky wants to know:

How many of you do not show the RF factor in your blood work or how many have been diagnosed with seronegative RA?

Thank you in advance for taking the time to help her out and answer her message. (((pain-free internet hugs)))

What our members have said so far:

Linda – I have RA throughout my body very badly and I was negative for the factor in my bloodwork. Have quite a few other autoimmune diseases also.

Toni – I have no factor. Seronegative.

Niki Wyre – To weigh in on topic, I’m seronegative.

Jackie – I tested positive for the RA factor at 15. I recently tested negative (at 22) but still have all the symptoms

Kari – Me too!

Amanda – I have

Sarah – Not positive and have throughout my body as well. Only control on MTX and biologics

Amanda – Also just got diagnosed with skin lupus. Am on Enbrel for my RA

Ange – I never get told what my blood tests say.

Karen – Me

Victoria – Hi I have weak positive seronegative so they say

Heather – last RF test didn’t show but over the last number of years sometimes it does show positive sometimes it doesn’t

Brenda – Seronegative erosive RA, here. After having mixed diagnosis for several (waaayyyy too many… argh) years, it was determined after analyzing my history, symptoms, and comparing xrays of knees over the years.

Judy – I am seronegative..

Tricia – I just have very high c.r.p.. I was on Humira and now trying simponi

Jennifer – Me!

Martha – Seronegative and if it is positive is barely high. Rheumy said I am still considered sero negative

Julie – I do not show the factor but was diagnosed three years ago. The doctor thought it was RA nine years ago but wouldn’t give a definitive diagnosis until MRI proved synovial swelling and significant bone absorption in my hands. Still to this day do nut demonstrate the factor clinically and still losing bone Have been on many different drugs and we are still looking for one to slow the progression.

Victoria – To ange – you should ask them and get copies x

Melissa – Me.

Peggy – I am seronegative…

Julie – Me….RA factor neg….

Emily – I have never had my RF factor come back positive. Just my CRP.

Kellie – Me too

Ange – I very rarely see my Rheumy.

Michelle – Blood work came back negative but have it as well.

Shelley – 10 years ago i was diagnosed as seronegative for some reason no rheumatoid factor test was available for me until about 5 years later then i had the RF in my blood. Just had another done Friday ready for me to attempt Ritixumab in couple months , waiting results of that soon.

Amy – I am sero-negative too.

Margaret – Was diagnosed sero negative 20 years ago. never better than dirt or a criteria developed psoriasis 8 years ago and uveitis 5 years ago. diagnosis officially changed to sorry attic arthritis

Kristina – RF in blood work

Pat – RA Factor low positives

Peggy – Oops , seronegative, brain and hands do not work very well these days : /

Jacqui – Me I’m seronegative

Jennifer – I was diagnosed w/sero-negative RA a year ago. Very frustrating trying to prove your pain when u have no “proof” to show for it!

Tricia – I am seronegative too

Stephanie – Seronegative crp also never shows anything..but for seven years they have gone by symptoms

Rose – I’m seronegative. Diagnosed 20 years ago and have never tested positive.

Julie -Wow! Now this seems to be a hot topic ! My sic says 20% of us do not have the factor. Must be the vocal 20%!!!!

Cindy – I test negative too!

Janna – I am sero negative.

Amy – I am seronegative.

Amanda – I was diagnosed in my early 20’s (now 45) and I had a negative rheumatoid factor. I was diagnosed through a bone scan – pretty much every joint in my body lit up for inflammation so the RF factor issue is an interesting one. I am pleased to say that I have been in remission for a few years now – still have my bad days and can’t overdo things, obviously, but I have been truly blessed. I have my wonderful rheumatologist to thank for managing to diagnose me and get me onto treatment as soon as possible.

Michele – I tested seronegative for 6 years. then 8 years ago had a son and at my first check up after I finally showed an rh factor and also tested positive for sle at that time.

Carolyn – it showed in my blood work.

Cateepoo -RF didn’t show up in my blood for over five years. It does now.

Laura – I am also sero negative, its a new thing for me as a child I tested positive but now as an adult I have symptoms but test negative most frustrating as I was fobbed of with a remission when I first tested negative, I wasn’t and 3 years later I have joint damage that restricts me daily.

Amber – Me. 2 yrs and still seronegative.

Margie – Seronegative for me

Mary – I was neg 12 years ago when it hit, I test pos now though.

Danielle – I’m serum neg

Roxanne – 96.2…. Blew first rheumy’s mind, current rheumy too but “cocktail” of meds for RA, SLE, and fibro a blessing

Crystal – I’m seronegative. Being such delayed my diagnosis by probably 10 years.

Lourika – Sero neg here

Tender – It was negative in my bloodwork. Took a couple of years comparing xrays etc to get a firm diagnosis. Sister has scleroderma, a 1st cousin recently died from it. Many other relatives have RA. Daughter has gout. Haven’t had a serum test.

Corrinne – I too was seronegative, however my anti-ccp was through the roof, my ESR was slightly elevated. I was diagnosed two years ago, still seronegative.

Theresa – My foot Dr. found a nodule in my foot and I was diagnosed through that.

Leah – Seronegative here too… 2 years since diagnosis

Georgianna – no rf fact…but have it…..

Debra – I was seronegative the first six months. Weird, huh?

Jessica – I have Seronegative RA, I was diagnosed only after x-rays..I already have erosion and damage to my joints. I noticed yesterday that my fingers are already beginning to curve. I went a few years with no diagnoses and wondering if it was all in my head and had some really uncaring doctors until one doctor was smart enough to do x-rays. i went from Dallas to Mayo Clinic to find answers and not even the so called “best doctors” were smart enough to figure it out. I was finally recommended to a doctor in my home town “which I should have went to in the first place” and he ordered the x-rays and the sonogram on my joints..within an hour I had my answer. I will tell you from experience that some people will tell you that sero-negative is not as serious as positive..that is not true..because we don’t have the RF factor it is harder to see the damage being done unless you have x-rays. That is the only way they have been able to watch mine..mot to scare you..just being honest…I hope you are doing well!

Michele – Seronegative here too. I was dx’d after 3 years by MRI showing synovitis in my wrist.

Jilly – Was negative for the first 10 years or so, now mild positive I’ve heard it’s not as accurate a marker as once thought, though a strong positive is supposed to be linked with worse secondary disease (though its not a way to tell the severity of the arthritis) so it’s a good thing to be negative!

Mary – Me too. It took forever for my inflammation levels to be high enough that a doc would do anything and now I’ve got enough damage I can just stick out my hands like “see.” I wonder how many of us could have been spared joint damage if docs were better informed about seronegative RA.

Susan – seronegative since may, 2011. no RA meds at time. Low immunoglobulin A & G, On IVIG therapy in hopes to build immune system up. Really frustrating because it’s there, but invisible.

Denise – My rheum just calls my conditions inflammatory arthritis and Sjogrens. I am seronegative.

Susan – This is me, took many years before being diagnosed and eventually having x-rays confirmed i had sero-negative type RA…

Rachel – neg here

Lisa – negative, but diagnosed with severe progressive RA. Took 2 years to diagnose. ESR’s run between 33 to 50, very seldom any lower then 33.

Cindy – negative on both here

Chris – Me, and I work full time.

Rachel – Seronegative here xx

Sam – I’m seronegative too x

Melissa – Same situation. Seronegative w severe RA.

Tania – Initially not in but I was diagnosed really early but within 12 to 24 months appeared in blood work

Jennifer – i know my factors are usually high 50’s

Lila – I’ve been diagnosed with seronegative RA (interestingly, I was also diagnosed with seronegative celiac disease)

Heather – I am Sero- Neg and my RA is really bad. A lot of joint damage because it was almost 10 years before a correct diagnosis due to this.

Patricia – RF in blood work.

Sarah – I’m seronegative….delayed diagnosis nearly 4 years

Gretchen – Sero-negative, but have shown positive RF in the past.

Jessa – Sero-neg.

Kay – I am seronegative and it is why it took 3 years to get diagnosed. If it had not been for a nurse practitioner who decided to draw fluid out of my knee and discovered it was RA fluid (RA fluid is yellow – Osteo fluid is clear) I believe they would still be telling me it was all in my head. I would give anything for those 3 years back as I believe I would have this mess in remission!

Dana – Seronegative from age 2 till 6 months ago.

Lynn – All labs “normal” by ACR standards, including neg RF, but body tells a different story with MRI showing swollen eroding joints, pericarditis, etc.

Cheryl – I am seronegative, my Rheumatologist tells me that I won’t develop lung issues and that my hands won’t change, not sure if I fully believe that, have noticed some small changes in my hands. I wonder if any one else who’s seronegative has heard this?

Kelly – Seroneg. ESR, ANA sky high

Amber – I was initially diagnosed as seronegative, but my RF skyrocketed about 2 years ago. Doesn’t matter one way or the other, it’s still RA, debilitating and painful.

Rheumatoid Survivor – Sero neg here.. I am ANA pos Going on 3 years..

Jamie – Sero neg. RF ANA and Anti RO SSA + dx is SLE RA Sjogrens and Hashimotos

Andrea – I was Dx’ed undifferentiated in 2001 but it was changed to seroneg RA in 2007. I was finally sero positive in 2012 with a positive RF. I got the Dx in 2001 because pred made me feel better. My rheum actually got me approved for bios in 2004 with an undifferentiated Dx which surprised me

Conni – no RA factor, seronegative causing me to be denied any treatment since original dx 20 years ago by doctor in different state.

Jennifer – Seronegative RA for me!

Liz – I’m seronegative too.

Kristy – Seroneg here too, crp and sed rate high but no rf. fingers have changed and the first few days I stop taking my meds I swell up in all joints and can barely move. Have surgery planned to remove a tumor in Feb, so scared to be off meds for six weeks.

Amy – I test negative & because of that it took over 10 years for me to get a diagnosis. @ Cheryl Slavek-Killion – I don’t know what your rheumy is talking about personally my hands are totally disfigured, disabled & painful & now my feet too, that is what led me to keep trying to figure out what was going on. My rheumy said 30% of people will never test positive.

Mary – Seroneg here.

Carla – I am seronegative, but my rheumy says 85% of us are seronegative. Been on tx for 10 yrs.

Sabine – i never had the rf in my blood i have Arthritis Psoriatica (for almost 6 years now) and Tietzens syndrome (diagnosed a few months ago).

Sally – Me!

Aleta – I’ve had the symptoms close to 10 years now. My aunt has severe RA so I knew what I had and just kept putting off getting diagnosed (denial). Then when I went in they said I didn’t have it! After several drs I finally found one that did a full body scan. Every joint in my body showed RA. 8 years later I still test sero-neg.

Widow – I’m Sero-Negative.

Rhoda – Me . But it showed up the first time but hasn’t again in a year even during a flare up. And they always want blood at least once during a flare so they can compare

Aimee – Sero-Negative here! I’m still judging my new rheumy who I am getting the feeling thinks that since I’m sero-negative I’m not in that much pain.

Kelly – I was originally DXd that way but time has proven my DX is actually psoriatic arthritis not rheumatoid. Not that it changes much other than its attacking my skin too. It’s just as serious and treated pretty much the same but I see a derm too to try and get this psoriasis mess under control.

Karla – Here! Started getting symptoms 4 weeks after my daughter was born and my PCP suspected it after my alkaline phosphatase was increasing in 2 blood tests, then got a bone test that showed small issue in my ankles before I got referred to my rheumatologist. Every other test negative, and I kept getting worse, feeling great right now that I am pregnant, not looking forward to it postpartum

Cyndi – I show negative every time.

Kelly – I still show up negative and it’s been 2-1/2 years.

Patti – Me too!

Kim – I am seronegative

Ann – Seroneg here too. 39 years old developed symptoms at age 13. Took them until 4 years ago,to put me on meds that’s to the Sero negative

Lisa – I have never tested positive for any of the blood work. I am sero negative and was finally diagnosed about 13 years ago. I have had some of the symptoms for 30 years before diagnosis.

Tracie – Negative here

Heather – I’ve had a 58 rh factor, but never have a high sed rate. Is 58 considered “high”?

Kelly – seronegative but dr calls me polyinflammatory RA / with hashimotos thyroiditis…working up for sjogrens also…8P

Christy – I’m Sero-negative

Danielle – I’m sero neg positive Anna an p- anca I also have IBD x Oh and my body is def changing x

Karen – Am seronegative. My diagnoses was only via HBLA27 gene & arthroscopic fluid after surgery on a soccer ball sized knee as bloods all negative esp RF factor. 18 years later at 41 and worsening symptoms blood work all still remains negative but errosive damage under xray has progressed to secondary damage especially in hands & feet. I have an RA dx to give me more treatment options but technically with entethesis etc am considered seronegative inflammatory arthropy which apparently responds to different types of biologics.. Hoping that my orencia kicks back in soon. I had to stop due to open heart surgery -anyone else had to stop and start again? Rheumy said 3 months should be sufficient- 5 months on still no real noticeable increase…

Michelle – Seronegative here to.

Jessica -Seronegative! Luckily, I was severe out of the gate, so it didn’t affect my diagnosis. However, it affected my ability to get paid disability from my company, despite the fact that my doctor essentially disallowed me from working. Unbelieveable to see how many of us are in this boat!

Wendy – I am seronegative but my ANA is very high!! Whoever said that being seronegative was not as bad as positive RF is crazy!! My RA is a raging beast that is just out of control!!

Cherie – Seronegative too

Sara – Seronegative for 10 years now, but have had some great rheumatologist that recognize my symptoms. This week was the first week I ever received xray results that had any evidence of damage.

Elizabeth – I am seronegative too…I agree, having a negative RF does NOT mean you have it less severe at ALL! My mother was neg also. And it is wild that there are so many of us!

Ruby – Here too, several test but still negative, diagnose of lumbar sco as well, 4 fracture bones due to this. Diagnose when i was 24, been 6 years in pain

Patrice – I was seronegative from the time I was 19 until I was about 42. Before that I was diagnosed with complements, DNA testing, and I had 10 of 11 symptoms.

Iris – neg here

Laura – Both my father and myself….

Ava – I’m seronegative.

Melissa – I am. Should on my xrays.

Rosaleen – im also seronnegative

Caz – I am seronegative too

Laura – I 1st tested RF at 156. Positive. In 2010. Got a second opinion last month seronegative and RF is 6. Whaaaaaaaa??? ANA is 499!!!!!!

Betsy – I was diagnosed by my x-rays. Had it for 15 years and finally show positive.

Sarah – I’m RA factor negative. I was diagnosed at 2 1/2 and I’m now 20.

Shana – Seronegative!!!

Alanna – seronegative! my daughter needs to see the rheumy as well and I’m sure she will test seronegative.

Lorna – seronegative.

Ali – RF negative, ANA positive, Erosions in wrists shown on MRI

Sumayah – I’m seronegative

Lisa – Seronegative for the last 6 years. ESR was high only twice. Erosions noted on my left wrist.

Chris – i don’t show rf factor either

Joanna –

Rhonda – sero neg here, inflammatory markers high, il6 extremely high, on mtx, plaquenil, and humira, last two flares were as bad as my first one 3 years ago, so i will probably be taken off humira and trying something else. i have an awesome rheumy except he won’t diagnose me just yet even though he says i have ra

Francis – Seronegative RA. Everything else pointed out RA. Im being checked every 3 months to make sure its not Lupus. Currently on Family and Medical Leave Act so i can call in sick if im having a bad day.

Lynn – I’m seronegative although all paperwork its written as ra x

Elizabeth – Rf positve, but not for the first 18 mth.

Kaye – Seronegative also!! However, my Vectra-D test showed highly elevated IL6 levels, not associated with any other inflammatory issues. All other blood tests are ‘normal’, but looking at my hands its obvious what is going on. Been on disability for 4 years now. Taking Actemra and loving it so far!!

Jamilla – totally Seronegative!

Sarah – me

Cheryl – I was seronegative for years. Eventually it shows up positive for everyone, I think.

Cheryl – totally seronegative! The latest rheumy said I didn’t have it… then all my joints swelled up,including artificial knees. The rheumy still argued, until the ortho surgeon replaced all the plastic parts on both knees at once, then decided I had a really bad flare. My knees swelled because of the synovial fluid normally present in all joints.

Becky – Me too!

Stacee – Me!

Vanessa – Seronegative here.

Luz – Seronegative but X-ray showed damage

Dee – That’s me

Pamela – Had positive ana and positive for anti scler 70 misdiagnosed with fibro for 4 yrs just diagnosed with RA last January confirmed with metacarpal joint MRI and surgery on joint

Pam – Seronegative

Cristy – Isn’t it R.A. factor?

Debbie – Re I was also negative but with a sed rate of 89… couldn’t move in bed one morning, husband had to lower me to the toilet, turn me over in bed and bathe me…that was 10 yrs ago, I am now 54 take remicade, plaquenil, methotrexate, folic acid…diagnosed with RA and just diagnosed with osteo in spine…applied for disability when I couldn’t work and it took almost two yrs before I got it…but I did get 2 yrs of retro benefits…I get remicade every six weeks…

Donna – I don’t have the RF factor and haven’t in the 3 years I’ve had symptoms and been treated but was positive for CCP or CRP…can’t remember which. My ANA was very high – 1:1280. I’m being treated as if I have RA because I have a lot of RA symptoms but rheumy and Fam Doc are pretty sure that I’ll eventually show signs of Lupus as well. The meds I’m prescribed are used for both conditions.

Vickey – I have before. The Dr keep going from a RA diagnosis to a psoriatic arthritis diagnosis. Right we are on polyarthritis!

Lila – I tested positive for RF factor but was only at 49 which the Dr. told me indicates little to no disease activity. Oh yeah… My CRP was around 49 too… Was on Methotrexate and plaquinel for a year and a half, and it brought the CRP and Sed rate down to normal levels so I am left with a diagnosis of Fibromyalgia. I would like to know since when does Fibromyalgia raise your CRP, Sed rate, and give you RF factor???

Gretchen – Sero neg

Faye – Seronegative for me too

Shirley – Seronegative and that’s been about 15 years!

Becky – I’ve been negative for going on 20 yrs.

Angella – Seronegative

Jeanne – YOu all have made my day. I am sero negative and have psoratic arthi. also.

Jennifer – Negative since 2008.

Lynn – i’m seronegative too

Kimberly – Neg since 1984, extreme damage, crp elevated

Tammy – I am also neg, but high inflammatory markers, with fibromyalgia markers as well. I am on plaquenil and methotrexate but still inflammation is high. Diagnosed 11 months ago.

Shannon – I have sero-negative too!

Nina – Seronegative here.

Linda – Young Seronegative. Diagnosed 9 years ago.

Claire – Seronegative n psoriatic arthritis depends how they are feeling lol both suck.

Stacy – I was diagnosed with seronegative RA. My rheumy told me it is not uncommon also I have Sjogrens and since it is an autoimmune disease the rheumatoid factor usually does not show up

Wendy – Sero-neg and dealing with RA for 14 years

Waynette – I’ve been sero-neg my whole dx. Some ppl become positive after having RA awhile. But i was dx’ed at age 7 in 1984 as having sero-negative polyarticular JRA and am still RF neg. Negative for a number of markers actually. Yet docs term me as having anything from mild (ha I wish) to severe RA.

Kim – My 1st tests showed nothing. The 3rd one did

Di – Sero neg aswell with other symptoms to confirm including MRI.

Michelle – I was diagnosed with RA three years ago and have yet to have a positive rheumatoid factor. Luckily I had a great internist who was on top of my symptoms and she ordered the right tests; when the RF came back normal/negative but CRP and SED rate were elevated she referred me to a rheum right away and she hit the nail on the head saying she suspected sero-neg RA. The rheum confirmed it. 15% of patients with RA are sero negative, and some of those patients may never register a RF.

Bengta – I’m sero-nego as well…

Alicia – I was seronegative when first diagnosed two years ago and just recently did a repeat of blood work just because and I have a positive RF factor now

Kim – seroneg

Rachel – Yup i’m another seronegative one! x

Cheryl – Seronegative, moderate to severe, uncontrolled.

Evelyn – No RA factor here. I was diagnosed with Psoriatic Arthritis

Brenda – Hi everyone. I read often but don’t post. I was diagnosed with seronegative 7 yrs ago. I was 38. In the best shape of my life. Teaching aerobics. Out of nowhere. Fatigue. Pain. I could hardly walk. The pain mostly settled in shoulders hands hips and toes. After internist, neuro I ended up at my rheumy. I was inside the virus window (6 wks)so he wanted to deal with the pain and diagnose later. After a few rounds of prednisone, an allergic reaction to sulfa salsa zone, and a start on plaque nil, my SED went from 39 down to 3. My ra factor was negative. The rheumy continued to watch my inflammation, and it responded to the plaque nil after many months and SED staying low. Rheumy told me that it looks like RA responds to medication like RA, bilateral, multiple joints, fatigue, etc. and other RA symptoms–it must be RA. Maybe the RA factor might become positive later but it never did. Therefore. Seronegative RA for me.

Stephanie – I do not show the RF factor and neither does my mom. I was diagnosed nearly a year ago, but my mom has had it for nearly 30 years and she definitely shows physical signs of it.

Trillian – Gently i have been undiagnosed or whatever because i had a test that was seronegative. since then, i’ve had several tests, some of which show disease activity, some which don’t, and none of the times has it been very accurate, at least according to the actual symptoms. in other words, at my very worst, it will register nothing, and on ‘good’ days, it will make the doc more responsive and serious. soooo…whatever. but, that doc will NOT use the vectra DA test, so i’m about to dump him. probably. he’s basically just an mtx dispenser now. i guess it will depend on whether or not he will up my mtx at my request, cuz, tho he says he is ‘satisfied’ with how i’m doing, i’m not.

Ilsa – I have seronegative RA. It doesn’t really make a difference.It just took longer to diagnose.

Lisa – It didn’t show up in my blood work, but I have severe RA.

Nina – Seronegative, just diagnosed 6 months ago, as you can imagine I was sick for quite awhile before being diagnosed.

Laura – Seronegative! 34 years! Oh how I fought with several rheumatologists in the early days who insisted pain was in my head because the labs didn’t show inflammation–I kicked them to the curb and found a rheumatologist that understood the issue!

Julie – Seronegative here. Diagnosed Nov 2012.

Tina – Seronegative..but moderate to severe RA…on plaquenil, MTX, & Humira injections…diagnosed April 2012 after having unexplained & undiagnosed issues for about 10 yrs. Was sent to a Rheumy in April after being at ER with high Sed Rate & high CRP, fatigue, sore joints all over & fever but no infection…but my Rheumy is great

Michele – Seronegative. High ANA. diagnosed as seronegative inflammatory arthritis. Symptoms since 1996.

Kathy – I was diagnosed sero- negative

Tracey – Wow..lot of female seros out there. seems contrary to being more common in men..

Jessica – I’ve tested RF negative since I was 15 months old, when I was diagnosed. An ANA and white blood cell count and Sed Rate are much more reliable tests.

Lori – Seronegative for 8 years with severe disease

Molly – I wanted to say I have the exact opposite. High positive RF, high positive anti-ccp, never once had an elevated sed rate or crp even when I have visible swelling. Frustrating!

Tracey – sero negative, as is my daughter and mother in law – all have RA

Linda – This conversation always intrigues me because I understand why it’s such a topic. What are the big reasons we want/need to know? Seems like RA has many faces and some are RF neg and other RF pos. Right? I was sero-negative at first and my rheumy doesn’t believe in ever retesting, so 6 years after diagnosis of RA, I had to sneak it in when my family doc was ordering labs for a physical. Was always curious…. came back RF positive. My rheumy was confused when he saw that result show up since he was copied on the labs, . He said, “I didn’t order that!” I just don’t get how being positive or negative for RF changes or effects us. Can anyone explain?

Sharon – Me!!!! First they said OA, then PsA, now it’s like, screw it, you have RA. When I get time I’ll post my recent story with low immune system and staph infection, and how IV medrol is CRACK!

Dana – I was in 2010 and continue to be. I was officially diagnosed by an MRI of my wrist and hand. otherwise, I don’t know if I would have been misdiagnosed.

Amy – Oooo Me Me Me! Lucky me was diagnosed with Seronegative four years ago.

Kelly – Me…13 years ago.

Chelly – High RA factor (blood work) on Mtx, enbrel, prednisone, folic acid, gabapentin and tones of pain pills

Pamela – Me, I do not show the RF factor but I have RA !

Anje – I have been 7 yrs of going back and forth with test and different meds. Its RA…no its just Seronegative…lets test you for this or that. Oh there’s no inflammation…its just arthritis…your age…lets just treat the Fibro because that’s whats causing all your pain. Ugh…after all these years…I know when its my joints or my muscles. There is a BIG difference…. Frustrated!!

Beth – Seronegative! I had Nuc med test- all my joints lit up!

Zibeda – Seronegative! Moved cross country and had to find a new RA doctor…I got the gee, are you SURE you have inflammatory arthritis?! Um, its really NOT too difficult to discern a flare!!!

Mary – Seronegative but high inflammation. Currently I’m on MTX, folic acid, Celebrex for the pain/inflammation. Had to stop cortisone due to a stomach ulcer! I’m going to have a TKR next month otherwise I would start humira injections.

Deborah – Beth.. What is that test?

Wendy – Seronegative and high inflammation

April – I am seronegative also. It took a long time to be diagnosed. I had a dermoid cyst the size of a grapefruit that took over my left ovary and had abdominal surgery to remove it. I had a terrible time recovering and the doctor treated me like I was just upset cause you know “there is nothing medically wrong “. I hate that phrase. 6 months later they opened my abdomen back up and performed a total hysterectomy. Within days I developed an ecoli infection from the surgery. I tell you that is one of my most painful experiences. I never got better and for the longest time I had to hear that I was depressed. I thought how does depression make my toes and ankles turn red and hot and swollen, right. The myriad of symptoms continued relentlessly, I crawled up the stairs of my house, I raised my youngest through her toddler years in my bed. I was diagnosed with everything under the sun. My favorite was reflex sympathetic disorder (on account of my red and hot ankles and feet ) and I almost let the doctors surgically implant a sympathetic block. Which is an electronic sensor thing that goes in your spine and you have a remote switch you push when you feel pain and the thing in your spine sends a signal that stops the pain signal from reaching your brain so you don’t ever feel any more pain. Sounds great but doesn’t work for RA. I finally got diagnosed in 2008 after finally getting to a rheumatologist. I had to fight hard. The fact that I was RF negative is what stalled the referral to the rheumatologist. Being seronegative doesn’t have any thing to do with the severity of your disease. It just makes it hard to get someone to believe you and made it hard for me to believe it as well. I have no doubt now but lost a lot precious time that I should have been receiving treatment. It was hell. I am a huge advocate for getting the info out there about seronegative ra and maybe less people won’t have to share the same experiences I had.

Rose – Me… Sigh… And that stupid piece of non-obvious bloodwork delayed my diagnosis for 8 years. Also am told “you’ll have less damage, inflammation, pain…. Et cetera.” Uh hum, yep, yep, sure… Whatever you say…. So then why are my joints still swollen and painful then, if my ra is stable and controlled?”

Mary -Negative here too. Why does it take a positive for them to believe you? I am seeing yet again, my 3rd rheum next week. I am PRAYING that this one will help.

Kris – Diagnosed 6.5 yrs ago..always had the RF. Highest its ever been is 420. First misdiagnosed with Lupus. I got diagnosed because of vasculitis on my legs n feet. then got re-diagnosed with RA and secondary sjogrens. I lost my health insurance 7 mos ago so haven’t been on meds since then, vasculitis is super bad, so much more pain, sick all the time, no energy etc…My RA is in my knees not hands yet..starting more into feet first.

Karen – Kris, you need to apply for disability.

Justine – Yep seronegative dx in 2009

Cathleen – i dont have the factor

Carol – my rheum factor was 1200 on diagnosis..diagnosed at 40 years of age

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The above is a discussion created by a member and with member generated responses from our Facebook community ( put into a format so that the discussion can be archived for future answers needed by others in a searchable format while keeping member anonymity. Member provided information, statements and opinions do not reflect on or all individuals with Autoimmune Arthritis. We encourage all members to seek professional medical advice for any specific questions and concerns as this does not substitute competent medical care.

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