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I was diagnosed by one rhematologist in Nov. of 2008 with Rhematoid Arthritis.   I went for a second opinoin a few months later and this doctor says that since all my labs are negative she is not sure I have RA.  I am totally convinced  I have arthritis of one form or another.   I have very stiff joints, extremly sore, stiff, and they will swell sometimes too.   Mostly the ones affected are my hands, fingers and wrist, my toes, ankels, and my elbows.   I have DDD in my back and did in fact have a ALIF surgery in DEC of 2007.  I have a neck MRI about a month ago and arthritis was found in my neck as well.   The first rhemmy put me on plaquenil and it started to help, the second rhemmy made it sound like I could take it or leave it up to me.  I decided to go off of it because it was causing a LOT of stomach pain.  I was off of it about a week or so and I had a huge flair.  I was in so much pain with my joints and I was so stiff if the mornings and anytime I sat for an extended period that I did not think sometimes I would be able to get up.  Now the second rhemmy told me to go back on the plaquenil, it is now five weeks back on the medication and 85% of the stiffness is gone but I still have a good deal of joint pain.  

At diagnosis all of my labs were negative.  There are those of us that have RA and we are Sero-Negative.  I have taken Enbrel, Methotrexate, Prednisone and Plaquenil.  Due to secondary problems I am now only on the Plaquenil since it is not an immuno suppressant (sp?). Thank you for answering.  So it is reasonable to be on something other than plaquenil and be sero negative?  My rhemmy told me that since all labs are negative she would not consider putting me on anything else right now.  Yet, I have SO many symptoms.   For now I seem to be tolerating the Plaquenil on round two of it fair but I wanted to know what others experineces were that are sero negative.   My doctors act that if you are negative you 100% do not have RA.  I wish they would tell me then what is going on.  I do however have another doctor that is terrific and believes with every fiber of his being that I do in fact have arthritis. I think I am either going to see another rhemmy on go back to the orginal one that first diagnosed me.   Again thank you for your post. tinkster,

And you are just a wealth of information aren't you Lev --- 

So, are you seeing the first rheumy or the second? Whoever you are seeing, you need a change. Maybe you don't have RA, maybe you have Lupus or Sjrogrens. But maybe you do. Seeing that plaquenil helps you, I certainly wouldn't go off it again. Usually meds are just added to the previous one and not changed for a different one. These diseases are very hard to treat. And as you know, these diseases are for life. There is no cure, you can only hope to slow it. [QUOTE=tinkster42] So it is reasonable to be on something other than plaquenil and be sero negative? [/QUOTE]

Recently Lynn49 opened a POLL one the sero negative/positive issue. You might find the results interesting.

Any 'of interest' thread was started by LevLarry, Mild Moderate Severe RA.

A search of sero negative will bring up many threads where the frustration of diagnosis is discussed.

I hope you find a solution to your conundrum very soon. Cheers, Shug
Thank you everyone for your help.  It is very much appreciated.  I have decided, after talking with my husband and thinking things through that I am changing rhemmys.   I dont think this one is serving my interests at all.   Aww Lori, I'm sorry you're going through this. I agree with cheesehead and lev's comment made me laugh... Definatley do not go back to your second rheumy . I am on my 3rd and have heard from others sometimes it takes going through different rheumys to find the right one. Jeeze if the Plaquenil is helping then don't go off! Everything you've said sounds just like RA ...I know it's hard waiting for that appt and having to tell your story all over again to a new rheumy but hopefully it's worth it. Sometimes you need more than one med ( plaquenil) to get the inflammation under control . I was on plaquenil and now have been told I need something else with it because ra is advancing. You DESERVE a rheumy that will answer all your questions and guide you through things not ignore your questions or make you feel worse! When's your new rhemy appt? Ask them to please put you on a cancellation list and call if someone cancells so you can get in sooner. Keep your spirits up... There's a dr out there for you.

Kelly Tinkster, the only thing I've learned in the past four years about RA is that I don't understand it at all.  You need to find a rheumy who will listen to everything you have to say, and who will DIG deep to find out why you feel the way you do.  I'm going through a similar (but opposite) situation.  I was diagnosed with RA nearly four years ago, on the basis of not only symptoms, but also on obscenely high test results pointing to just that diagnosis.  This year, I have been to two rheumatologists who think that I "might not" have RA.  But at least we're still digging to see just what the heck IS going on in this stupid body of mine. Well, Lev is not one for bedside manner but I tend to agree with him partially here, at least.

Basic Rheumatology 101 is that there are a good number of RA patients that have negative labs. If she doesn't know this basic stuff, is she a good rheumatologist?

I am seronegative as are many of us here...not a small percentage either. At a guess from my own observations there is probably 60% seropos and 40
% seronegs. Like I said, NOT a small percentage. Seronegative just means you don't have an RF. You still have RA and it's just as difficult to deal with. Also seroneg's are often not diagnosed as quickly which means by the time we do get diagnosed our RA can be rampant.
 
And just to make it less complicated you can have positive bloodwork and not have RA either.

It took them about 8 years to dx me. In the end, it was done over a 2 month period where my Rheumy literally dxed me by eliminating everything else.

Then I started on Plaquenil and over the past 4 years have tried most of the drugs. I am still not stabilized and I am now on Rituxan, which will take 6 or 7 rounds, six monthly to even see some results.

In my opinion, any Rheumy worth their salt, should NOT be dxing you on blood work alone. Your information about symptoms is much more valuable than bloods. Most of us have experienced feeling awful and our bloods are low or feeling great and our bloods are high or feeling awful and our bloods are terrible.

See, bloodwork alone tells us nothing.

I think another rheumy who can see outside the square, may be the way to go.
 
Good Morning, You need to find an RD who will treat you with or without positive labs.  I agree with Lev - time for a new RD! The doctor who is not treating you aggressively just because you are seronegative must have his head in a place where it's dark. Have you researched different docs in your area? Sometimes it takes some trial and error to find one you are comfortable with, but it's so worth it. :) Thanks again for all the help.   Yes, its correct the rheummy I was seeing is not treating aggressviely simply based on the fact that I have negative labs.  Heck she would not even prescribe anti immflammatories for me.   So its time to move on to a new doctor.  I have also made a decision that while I wait for the appt with the new specialist I am going in to see my family doctor and ask for xrays or ct scans whichever they do, I want them done on my hands and feet.  I have swelling, pain, and stiffness right now on both my hands and feet.  
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