Sero Positive vs Sero Negative | Arthritis Information

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Can we do a poll to see how many are positive and how many are negative and how you would rate the severity of your RA? Also what you experience with RA.

 
Ever since I found out I'm Sero Negative I find myself questioning if I have RA or something else.
 
I had a severe onset affecting symmetrically- just about every joint. My ankles, feet and hands were the worst affected with extreme swelling and were hot to the touch. It started in mid November and I could do nothing for myself by mid December. I stayed an invalid until along to my MTX 40 mgs of prednisone was added (increased I should say from 20) in early January.
I then got increasingly better to the point where my blood numbers say remission.
I don't feel great but I function completely and work every day.
Some days I feel crappier than others.
I seem to feel worse as the day goes on.
 
Seronegative here.  Negative RF and anti-ccp.  And about every other test except ESD and CRP.
 
I was not given an RA dx for quite a while because I had a monoarticular presentation, one wrist that was flared so bad my RD thought it might have been infectious.  But other joints have joined in the game, although not as badly as that one wrist, except for my right jaw, which flared very badly as well.  Just left wrist and both elbows for sure.  My foot, knees and shoulder give me  a bit of problem but I've been told that it's plantar fasciitis, a cartlide issue, and rotator cuff issue.  RD thinks I may have Reactive Arthritis.  I did have problems with my feet about 10 years ago that seem like mild RA now, as it responded to vioxx. 
 
I would say I'm not that bad off except I got erosions on my right ulnar styloid within the first year of being dx.  Just tiny ones, so I guess there's a chance they won't get worse than that.  I also have some in my jaw, but I've had TMD for years.
 
I know how you feel.  Sometimes I'm fine and convince myself that is true for the long term.  Then I overdo it and pay the price...
Sero negative and i have often wondered if i have RA or not. I have little swelling but suffer with symetrical pain esp in my hands and feet, I have one swollen knuckle since my teens . My xrays show damage. I also suffer with extreme fatigue. I have been on biologics and other meds with no relief and my RA is getting worseSero-positive (RF 330; Anti-CCP 238; ANA 1:1280 speckled & homogeneous; Sed 34; CRP 13)
 
I presented, initially, with a migratory pattern with barely a break between flares.  It didn't take long for the pain to become symetrical.  I considered my case mild and in the beginning Plaquenil, Relafen, and an occasional burst-and-taper of prednisone was enough for me.
 
After a couple of years, my condition progressed.  I tried Sulfasalazine, but couldn't tolerate the side effects.  I tried methotrexate, but it did nothing.  I convinced my RD to increase the methotrexate dosage when he wanted me to try a biologic.  The increase in dosage didn't work. 
 
By this time, I was flaring in almost every joint.  I was miserable.  I was thankful I had a very understanding boss that let me take off when I needed to - which at that time was a lot.  My RD finally just asked me why I didn't want to try a biologic.  I told him my insurance wouldn't pay because I wasn't a "moderate-to-severe" case.  At that point, he actually told me I was "moderate-to-severe."
 
I agreed to try Enbrel.  I feel I've done really well so far.  I've been on it since the December 2007. 
 
The only thing I've never understood through this journey is my labs.  Once I started Plaquenil, my inflammatory markers returned to normal (only the CRP occasionally is just at the highest normal or slightly over) even when I appear to be flaring.  I don't get it.  I guess I shouldn't care because I have an RD who treats me, not my labs.
 
Edited to add:  I don't always have visible swelling with my flares.  There have been times when my RD has noted swelling.  I thought I should add this after reading Pin's post.
 
kweenb2008-12-17 15:40:49Sero-positive (stats below)
 
My numbers, according to current research, forcast a bad prognosis.  Here has been my personal experience though.  My joints had obviously flirted with the disease for a few years, but it hit me hard last October.  Could barely walk, braces on my wrists, really stiff in the mornings...blah, blah, blah.  I saw my rhumey for the first time Dec. 20 and started plaquinel right away based on exam and RF, and ESR.  When the CCP came back he added the MTX a few weeks later.  The combo kicked in really quickly, and all I feel now are the lurking, teaser pains.
 
I think because the meds were introduced asap, it didn't get a chance to take hold.  Thankfully my doc follows current wisdom with being aggressive asap.  I am grateful for my numbers though.  I'm fully aware that they got me treatment and a dx faster.
RA - RH positive at about 140 originally, also SSA and SSB were off the charts (don't remember the numbers exactly, they are sjogrens markers normally).
 
RA presented symetrically in shoulders and knees. I was miserable, swollen, stiff, sore, and very fatigued. Now I am like a different person. I have been on plaquenil and minocycline for over a year, and everything is under good control. RH factor was down to 67 this October, about 1/2 of what it was last year. No clinical signs on examination -- no swelling or joint effusions. Some mild stiffness and residual pain in hands. And I still tire more easily than I used to. But I work full time. I guess I was mild to moderate RA but I caught it early and swiftly; I am lucky.
 
Bonnie
I have a positive RF, anti-ccp is 100. I had been tested for RF several times before and was not positive. The noticable difference between now and then. My symtems used to come and go. Now they are consistant. My medicine is helping me, at the moment. My swelling is down from what it had been.I have positive RF and anti-CCP.  I started out with awful pain, one hand or shoulder at a time periodically.  Moved to swelling, pain on both sides after a few months.    Not sure how I'd rate my severity.  I was on enbrel after 4 months of mtx and it seems to work pretty well for the most part - still working, so that's a plus.  Had I waited longer before moving onto enbrel, it's hard to say if I'd still be working and coping.   Glad I didn't have to find out.  
 
 
Interesting post.  Thanks for starting this thread. 
 
Seronegative here; although my sed rate and CRP were high.  I had swelling in my feet, ankles and fingers.  I also had stiffness when I woke up that would last well into the afternoon.  I also had a CT scan that identified 38 lymphnodes that were 2.5 cm or greater.  I started on plaquinel and arthrotec then added methotrexate and prednisone.  I recently started Enbrel and that is working wonders.  Unfortunately I am battling with a severe case of bronchitis and won't be able to use my enbrel until this clears.   
Sero=negative   I can't remember any of my labs but have them in the files upstairs... I do recall my ANA 1:160  --  read that 40% of positive ANAs have Sjogrens.. IDK if that's so .... all subsequent tests came back negative..   
 
I have only been DX'd by symptoms and observation of RD.. and he drew synovial fluid from my knee in flare and examined and lab tested to come to the conclusion of RA...
 
He would not DX before that even though I had JRA w/ deteriorated joints........
Seronegative, anti-CCP negative, normal HLA-B27, negative ANA, my ESR as of last week was 4, and CRP was negative so labs as of now reflect not much disease activity.  I wish someone would tell my RA that because I'm stiff as a board and hurting pretty badly.  I presented with only the left elbow being VERY stiff, swollen, and red.  I also had a really high fever and within days developed a spotty looking rash on the backside of my arms near the armpits and on the inside of my thighs.  This is to date one of the signs that I'm getting ready to flare, first the rash and a fever, then the swelling and pain starts big time. 
Since being put on the monster dose of pred, the rash, fever, and a lot of the inflammation is history but the pain is still there by the bucketload along with the stiffness.  Having read the posts of many folks here, I would consider my JRA/RA to be pretty mild.  Mild to moderate if I was really in a pinch to describe it.  I've had it for 23 years and my fingers are still pretty normal, a fact that I directly attribute to playing guitar for 17 of those 23 years.  The other joints that are bad are my left ankle and my right wrist.  I've also lost some ROM in my neck when turning to the left but not bad.   Ok, so my hips were the worst since they have been replaced but I don't count them now since they aren't my "factory" parts anymore. 
 
Bob H.
I'm just trying to get a handle on whether or not us sero- negatives fit the RA profile listening to everyone's descriptions.

Or does it seem like sero positives have more frequent and debilitating pain?

Are they on stronger meds?

So far I don't see much difference between the two. Just very different blood work.
That's about all I've seen too.  I was told once by a doctor that seronegative people have a higher tendency toward some of the joint deformity that is often seen in RA patients.  I don't know how true this is but it seems like that with me.  I've had JRA/RA 23 years and my fingers and toes all still look pretty normal to me.  My ROM is actually decent for having this so long as well.  Like I said though I view mine as being mild to moderate RA, my family see's it as being severe but if they read some of the posts here they would see it my way. 
 
Those that have what I would call severe RA, you guys are all my heroes. 
 
Bob
Symptoms started and I went to Stanford RA clinic, all labs were negative but spotty pain in ankle, toes, 2 fingers, and knee.  Skip ahead 14 years and I was hit with a debilitating severe onset of RA with RF over 1,000, postive CPR and sed.  Was either housebound or bedridden for much of the next 6 months.  Went into denial when I started to feel better and stopped meds, didn't see the RD until I was hit 4 years later with the flare from hell and once again I was bedridden and/or housebound.    RF still high, labs all positive, damage to ankle, wrists, fingers, toes, elbow, spine and cardiac and pulmonary complications attributed to RA.  Now 4 years later and many med cocktails I'm in clinical remission.  I started this journey with neg. labs, then high positive labs, and now back to neg. labs, no inflammation or swelling per MRI.  I guess I've been both sero neg. and pos. since 1985.  Lindy1985 was the same year mine was diagnosed.  I was dx with JRA at age 8 after a high fever and swollen painfull ankles, from there it went to affecting most of my joints although primarily affects my extremeties neck and back tend to stay out of it...I had a high sed rate when I was first dx, but ever since that first year or so I have had normal blood work, seronegative as well as not a whole lot of inflamation. My rheumatolgist has mentioned to me many times that she has found her seronegative patients to be trickier and more difficult to treat....IE me I havnt really responded to any meds...just enbrel a tiny bit. I do sometimes think i am misdiagnosed, because along with meds not working my blood work doesnt show ANYTHING!something I was told...
 
JRA/JIA patients will always be sero-neg as children....  and that you will also always be sero negative as adults...
 
anyone.. feel free to dispute this...
I'm sero-negative.. everything negative, but have erosions in hands and feet. My SED rate fluctuates a lot, and I have no idea what the current numbers are.
 
Lot of pain, exhaustion, fatigue, extremely warm joints, but very little swelling.
 
Started out symetrical in hands and wrists, stayed symetrical in everything. The only joints that dont seem involved are the elbows..I had my actual diagnosis in '94.. but looking back I have had joint pain since age 12 with real hip issues since then.
I don't know! I was just DX 6 weeks ago, by a Rheumy in Cleveland Clinic. I go back next month. I will ask
 
edited to add:
Swollen joints, stiffness, hip pain. feet, knees, fingers, neck......unwell feeling. I hope plaq works soon.
inflamedOnline2008-12-18 05:57:51Poss here. Don't remember #'s.
Current cocktail below working well after it got to were it is now.
When I finally got in to RD I was walking hunched over, very swollen hands, feet and shoulders. Some damaged joints but not to the naked eye. I can not stand in one place long or my feet just send there message to get off them. Fatigue was so bad I had to take a nap after taking a shower.  I guess I am moderate to severe but compared to many here I feel mild.
[QUOTE=RAJay] Fatigue was so bad I had to take a nap after taking a shower.  [/QUOTE]
 
oh... when I read this...   memories of this exact feeling came flooding back!! 
Sero +  classified as severe by RD and GP.  Pain 24/7, rapid fatigue, immobility, life quality badly affected.  Lots of co-morbidities due to cocktail of drugs, mainly form 9 years of pred.

Have made a career out of visiting DRS.  Extremely sensitive to all drug treatments, intolerant mainly due to allergies, so pred is my mainstay.  RA SUCKS - Janie.

[QUOTE=babs10]something I was told...
 
JRA/JIA patients will always be sero-neg as children....  and that you will also always be sero negative as adults...
 
anyone.. feel free to dispute this...
[/QUOTE]
 
Hi Babs,
 
There are kids that are RF + it is rare though.  My son (15) was first checked for RF at age 8 and was neg then at age 12 his arthritis became worse and he tested +.  From what I have read it indicates an adult type of ra and is more likely to be life long. 
oh Pam.. I'm sorry for your boy...... 
I'm sero-neg and I've been battling all these many many years... so maybe he will get a buy on having to have it for life.... we can hope.,.
Thanks Babs,
 
We are always hopeful
 
Oscar has been close to remission a few times  and overall does really well.  I am RF+ also.  I don't know , my RD said it put me in a higher risk group for severe arthritis with increased chance of damage.  I see so many sero negs that are far worse than I am and kids that are sero neg that have a lot harder time than my son.   Oscar has some Osteopenia from long standing arthritis but no erosions.   We feel very fortunate though. MTX has worked wonders for him.  We do really well day to day (all things considered) and know it could be a lot worse.  I worry about his future a lot but for right this moment he is do'n okay.
This is very interesting. If nothing else it has made me realize that I don't have to doubt my diagnosis which I have been doing.[QUOTE=babs10]something I was told...
 
JRA/JIA patients will always be sero-neg as children....  and that you will also always be sero negative as adults...
 
anyone.. feel free to dispute this...
[/QUOTE]
 
I won't dispute this one bit.  I was seronegative as a child and am still seronegative at 32.  I've also recently become one of the difficult to treat cases apparently.  I used to respond well to meds when first diagnosed.  I think it was because I was much smaller then and have blimped up pretty good since being on high dose steroids.  I feel that the biologics that are fixed dose (enbrel, humira, kineret) are not the best fit for me and that maybe the infusions are going to be my best bet due to the ability to "toy" with the dosing.  That's just my unprofessional opinion though.
 
Bob H.
I don't know sero neg or sero positive. I plan to ask next month.  Interesting thread.
Lisa
Hi, I just wanted to let you know that I have osteopaenia but after taking actonel for being on pred so long, some of the osteopaenia (a precursor to osteoporosis)was reversed, so it may be an idea to check with your GP if it is worth it.    Hope its of some help.  Best of luck from Janie. I started out seropositive, converted to negative on plaq then back to positive last blood test. I'm beginning to wonder if it really means anything.OK.. I'd like a qualification.
 
I don't believe you become sero-negative..
 
YOU ARE always negative... or you test positive and when the disease is in control.. you are still classified a sero-postive RA patient w/ control....
 
Sero Negative will never have the markers of the disease....

I had been a very low positive (between 16-18) since being diagnosed more than a year ago, and fortunately, my first year was quite mild.  But just recently I have felt the disease progressing, and my last blood test revealed RF 30.  I will start a low dose of MTX when we return from our holiday vacation. 

For me, the RF number corresponds to my disease activity.
YES.. As Nancy R. says.. that is the case "IF" you are sero-positive.. IF you never reflect a postive reading even in flare... and are classified sero-negative.. then that is what you are...  but, you don't change to become sero=negative by virtue of having had a positive reading at one time..
 
In 40 years... and multitudes of tests... I have NEVER had a positive reading..
 
kwim?
So if you are + you are always + even if at some point you read neg BUT if you are neg you can become + as the disease progresses or you may just never test +.  Is that right?
 
RF from what I get (and sometimes that is not much
 
Here is Wiki on RF:
 
http://en.wikipedia.org/wiki/Rheumatoid_factor
 
 
 
I read that before yet there are a lot of sero-negative people here who have very active and destructive RA. This is certainly a tricky, confusing disease.
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