seronegative ra | Arthritis Information

hi. just been to see my rheumy today. i was diagnosed with ra in april 2004. anyway, i have been on plaqunil 200 mg daily. i still have pain, particularly in neck and upper back. but, i have no swelling. i have pain and ache all over every day and i get tired out by 9pm every day, yet the rheumy says he now doesn,t think i have ra or that if i have. i may have seronegative ra. He says it is good news, but i don't feel too happy about it. mainly because i think i do have it. he says its cos i am ra negative. i'm confused.so i'd like to ask how many of you have ra seronegative and if i have'nt got ra at all. what have i got

I'm what they term "seronegative" but 20% of us are they say. It rarely makes our symptoms any better. I was dx'ed about 12 years ago even before the blood test were back from the lab. There's about 6 other criteria and I had all of those except two. I'll post a link in a little while so you can review those symptoms and see if they seem to fit you.

I was lucky to find a doctor early on who took mine seriously despite the evidence of blood work. Many, many, many are not that lucky. I truely believe had I not had treatment all these years with DMARDS I would be far worse today.

I started out with what they consider mild/moderate RA. I spent years using some of the weaker DMARDS like Sulfersalizine and Plaqenil with lots of success. Over the years it has progressed and I now take stronger medications to control it.

After 12 years my X-Rays have shown progression of errosions, but I consider them minumal concidering the number of years I'm been dealing with this.

I hope you will get the help you need if you do indeed have RA. Some doctors seem to waist valuable time trying to decide if it is indeed RA. A second opinion wouldn't hurt if you are not happy with the first.

Best Wishes;

Lovie

We're glad you're here.

Angie; here's the criteria I was referring to. http://www.arthritisinsight.com/forum/forum_posts.asp?TID=51 7&PN=1&TPN=1

You might want to look into that section a little. Early on we compiled a great deal of useful information for folks just like you. Make sure to click on "ALL" at the top of the area and check out about 3 pages of good information.

I have seronegative RA. My rheumy started treating right away with pred and mtx 2 years ago. It has reduced the terrible pain to what I have now - mild RA. Very little pain, mostly stiffness. No swelling. I am off the pred. now and take only 5 mg mtx and 1,000 mg sulphasalazine. I feel lucky I am doing so well. Hope it continues!

Susan

Hi Susan. Thanks for answering. That's what I think the rheumy decided I didn't have ra, cos just like you. I told him I realised after what I,ve read, I haven't got it as bad as a lot of others and for that, I was grateful. I didn't list my aches and pains because the last time I saw him, 9 months previous, which was also the first time I met him, I asked him 'what was the aim aim of treatment, to be painless or to make it bearable. He said 'the latter' so I told him only of what was causing me the most pain. my neck. He said it was wear and tear. Anyway, it upset me. I hate to feel I'm whining, but with this desease you know you don't look as ill as you feel. It makes you try to hide it somehow, like it makes you ashamed to pester people. I just go inside myself and it's very lonely in here. Anyway, He has done me a favour, I have finally stopped lurking and it feels great to talk to people who truly understand. Thank you. I'm not quite sure why having sero-negative RA would be "good news" compared to those who test positive. The same damage can be done either way. Next time you go to the doc take him a list of all your symptoms. Make sure you mention everything, even something you might not think is important. Personally I think if you've been having problems since last April and there hasn't been any improvement, he needs to put you on something in addition to the plaquenil. If you aren't comfortable with his answers it might be time to get a second opinion. Good luck!Angie,

I'm a seronegative ra person and was diagnosed about 20 months ago. My rheumatologist told me that not testing positive for the ra factor means I won't have as severe a case of ra than if I had tested positive but there are different thoughts on this in the medical community.

I can tell you that by the time I was diagnosed, I had ra in every major joint in my body. For the first 12 to 15 months I have never been so tired in my life. I'm on the big gun drugs now and doing better but no where near where I used to be.

Perhaps a second opionion is in order. I scheduled an appointment last summer at Johns Hopkins Division of Rheumatology and I was pleasantly surprised that the cost was not nearly what you would think it would be. My best advice would be to read, research, study and read some more. I believe in being my own best advocate and when you know something is wrong you must keep seeking until you get the answers you need. Most of the damage of RA is incurred in the first years so it's imperative that you get on an aggressive treatment plan if in fact it does turn out that you have ra.

Best of luck to you.

Susana

Hi Everyone,

Just wonder here ladies deal with ra arthititis pain more pain towward pms times or cuss dealing with menopause?See doc on Tuesday with my right hand middle finger knuckle red swollen has been for month now even after tynole or naproxin swellin not gone down here.Hurts to type at times.Have storms moving in tomorrow here no fun though we need rain.Also humidity up high or low pressurer is here I just want to cry hurt so bad drive me nuts.Doc just give me naproxin and thearphy,not sure go to Tuesday thearphy last week went next day woke with migraine so bad.I didnt call thearphy tell them.Never fails once or twice ,month get migraines really bad.Take vitamins try watch what I eat.Have neck injury from being hit yrs ago while walking .my posture not good,try sit up more sometimes just make pain more.Do neck excersies thearphy show me some times help other time not.Be nice for one month not have no migraine for change here.Also have bad disc in neck area and tmj.

Enough on my whinnin since fingers wont hit right keys no more .nite all stay safe.Hope not to personal of question here that i asked.

from shadow77

Hi!

I just joined today but I have been told I have seronegative RA as well (diagnosed "officially" about 2 weeks ago). I questioned my doctor since he hadn't looked at my x-rays (not knowing if they were needed for diagnosis or not) and he called back saying they were "normal for age" which he said was good because it meant there was little erosion from the RA yet, which is why he wanted to start me on methotrexate at the max. dose, to prevent further damage. Makes sense to me, but it would sure be easier in some ways to have a positive test result and know for sure!

c tuit

I do feel better, pain wise , than say 12 months ago. but, my quality of life is getting me down. I don,t moan too much cos I,m scared of stronger meds. I never thought of it as less meds, worse damage. I will tell all in future.

Shadow 77

I too am in the first stages of menopause. One thing I,ve had to learn is to stop trying to do things the way I used to do. It takes a long time to adjust to your new limitations, maybe, you are fighting it too. The best thing I,ve realised when my neck starts is to rest it.I know the pain is unbearable at times. Heat works best for me. Hope you get some relief soon.

Darcy Mj

I hope I have,nt got ra, but, I,m sure I have. Like you say, it,s the not knowing. If you ask me, they shouldn,t say you have something unless they,re sure. We all have people who don,t know anything about ra. and who you know think your putting it on, cos your fine one day and not the next, not to mention the disabilty office, It,s not easy to argue with the experts. Anyway I,ll have my results soon. Thanks to all who have answered. It.s great to talk to people. We all have something to contribute on here. I love it.

Susan

Seronegative is the same as regular RA except it doesn't show up in the tests - that's what I've always understood, at least...

I also have Sero-Negitive RA. My mother had it also...yet 4 years into her Dx's...she became positive.

Being Sero-Negative means the RA is there...and it can do as much damage as being Positive if it is not taken care of right away.

But...If you remain Sero-Negitive...and it is treated well...the damage is not as severe as a person with a Positive RA Factor.

Research is not sure why this is...but...they believe there is an anta-body in a Sero-Negitive persons blood that protects the cells and keeps the bodies inflammation down and damage down.

People with Sero-Negitive RA can Swell but not as severe as RA Factor Positive people.

Yes there are some benefits to being RA Factor Negitive...But...Damage can and will happen...so please take care of yourself...get a second oppinion if need be...and ask questions till the RHEUMY'S and DOCTORS Pass out!

It is your health...not theirs...that is what your insurance pays for and if you aren't satisfied with what they are telling you...

Like EMERIL SAYS...STEP IT UP A NOTCH...and get a 2nd...shoot even a 3rd oppinion till you feel you have all the answers...I did.

Roblyn