I don’t understand!!! | Arthritis Information

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Well...I just don't get it!

How can so many seronegative persons on this site have so many problems when most of the materials I have found say that we have it better than people with seropositive. Are they just wrong? Should I not be that concerned about my future? Since I am fixing to start Plaquenil (as soon as I have my eyes checked) and I am seronegative, I should not get worse, right?

Isn't that what they are telling us? We should be happy...our prognosis is good, right?

I don't understand!!! What does my future hold with seronegative RA? Can someone that has SN-RA for years let me know how worse it has gotten for them, if any? Help!!!!

Lisa,

I don't know the answer but I would sure like to know-it's a good question. I am seronegative too but don't seem to be doing terribly well. I wonder if some of the seronegative people have RA triggered by another autoimmmune issue and so have multiple issues? I have vasculitis which seems to have been the first problem and then got RA.

Laker

I've been seronegative for 13 years; although I don't know if they even test me for the ra factor now or not.

For myself it has been a fairly slow progression.....but I started a DMARD that first year and have been on some form of DMARD or Biologic; or both ever since. My doctors believe that is what has kept the progression fairly slow. Over the years it has taken strong medications and more of them to acheive the same results; but I'm still managing pretty well. The last couple of years have been really good.....thanks to MTX & Humira.

Some times are better than others; it's a roller coaster and I've given up on such answers as this. I'm not sure anyone knows. I will say that I manage a lot better than many I hear about here and some of those are also sero negative.....so who's to say? Some we hear from are seropositive and they don't understand why they aren't as bad as some of the negative folks; so go figure, right?

Progression wise I show changes on x-rays and MRI's and more places are affected than they were at first. I've also developed OA in my knees and at 36 I can only believe that's due to the RA. I could be wrong; but rarely do you hear about people my age with OA unless their body has had to deal with the stress of RA for numerous years. (Or other major stresses such as sports which I don't really do)

I know for a fact that things would be much worse for me had I not stuck to my treatment plan....even when I felt it wasn't nessesary. RA can be horrible one month and then you'll do fine for a long stretch. Do be fooled into thinking "It's cured" because if you let your guard down it will only get worse. It has to be treated whether you have numerous symptoms or not. During spells where you are doing well your doctor will cut your medication back.....but will insist you continue with it. That's good advice whether you want to do it or not.....do it. It will prove to be important years later.

Time passes quickly. Before you know it 10...12....13 or more years will have passed. A lot of damage can be done in less time than that. Be informed.

I am sero-negative and doing horrible compared to my previous life.  Enbrel and MTX have given me 3 to 4 moderate days a week with evenings always very painful but I am thankful for those days because prior to Enbrel I was so bedridden. 

Someone recently posted a study of sero-neg/pos RA patients and it found that sero-neg women have the same disease progression as sero-pos women but the sero-neg men did better than sero-pos men. 

It seems to me that there are more sero-neg RA patients than the 20% the Arthritis Foundation claims.

Every case of RA is unique and while we all look at the information that is out there we cannot say what parts of that information is going to apply to us.  Trying to figure our future with this disease can make us crazy people.

The best we can do is to see how we are doing with the medications and other treatments and go from there.  Let someone else figure out where we fall in the statistical files

Excellent question Lisa!  I wish I had an answer for it.  I have always been sero-negative.  Even being as crummy as I am now.  I had a slow progression of the ra and did well for many years.  It is only recently (this past fall) that I really went kaplooey.  Maybe keep in mind that Rh factor is only one small piece of the puzzle that the docs look at with ra (or are supposed to look at as one small piece of the puzzle).  Personally...I really don't think it matters.  Negative or Positive...ra is ra.  Some have it mild...some have it bad.  Some are negative some are positive.  It affects all of us so differently.  But, like I said, I personally believe ra is ra no matter whether you are negative or positive.  Blessed - I am pretty much exactly where you are - on Plaquenil and newly diagnosed. Did you just get an RA factor test or did you also get the anti-CCP test? A positive anti-CCP and a negative RA factor, according to my RD, can be a predictor of aggressive disease - meaning your doctor may want to treat it more aggressively. I haven't gotten my test results back yet.

I think your doctor is a better source of information for your prognosis than this site.  This site is a great source for so much information, but we can't tell anything about numbers or prognosis from what we read here because we're a self-selective group.  It seems to me that there are quite a few newly diagnosed people here (understandably) and some folks who have been around a long time who have lots of pain and/or damage. It may well be that those folks who respond well to treatment stop visiting the site or come around less frequently.  And lots of people on this site, sero-positive and negative, did well for many years before relapsing.

Another word on prognosis - I really believe that new, better, less dangerous drugs are on the way.  If we can keep the disease at bay for ten years while waiting for better drugs, yay!!!!

AlleyCat, you sound just like my husband! 

I wish I were as optimistic as he is, but I kind of wonder if there will be a cure anywhere in the near future.  Also, I keep thinking that even if a new breakthrough drug were to be discovered/created today, how long until it could actually be put on the market.

I do have a great deal of hope that there are better and safer drugs coming our way.  I just hope for all of us, and our children, that it is much sooner than later!

momto2boys - I have two boys too!

I share many of your concerns. But I still hope Oh man what I wouldn't do for better safer drugs for Danielle.  I am going to hate seeing her like me after an mtx injection.  I already talked to my rheumy when I was in for my last wonderful flare and he said he is prolly gonna put her on the mtx right away.  UGH.  But, we have to treat aggressively to give her a fighting chance at the future goals she has set for herself.  Grammaskittles,

I hope the first new and better drug that comes out works for Danielle, and kids like her.

I can wait (a little).

Allie
Blessed, when I was diagnose a bit more than a year ago, I was seropositive.
Now, a week ago, I am seronegative. So, I question if I have RA, or
something else although I have many of the symptoms. I'm not sure how
much value the Rheumatoid factor really is? I am going to ask when I see our rheumy in May for Danielle. 

Lisa, when I was first dx'd in 98 I was Sero Neg too (41years old)and it wasnt until a few years ago I became RA Positive. My Dr also told me I was lucky to be seronegative because those people fare better. That was then and this is now. I had some pretty rough days back in the seroneg days and I've had some in most recent days as well. I would say to you , dont dwell on the bloodwork at this point. It is what it is and IT can change. The important thing for me is day to day. In the beginning I had to learn my limits so as to try to do MY part in how my tomorrow would be. I have a doozy of a RA case in my opinion. Ive had it everywhere, vocal cords, neck, lungs, skin, of course joints too. I wouldnt put too much emphasis on your bloodwork as long as you are feeling good and taking care of yourself.

Better days are ahead...Hang in there.......


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