Zero Negative

What is zero negative erosive RA? I have had RA for ten years but I have no idea if I am zero negative, what does it mean.

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Hi Magnolia25.

Sero negative means that your serum antibodies for Rheumatoid Factor and Anti-CCP are negative but you still have RA - based on clinical signs and symptoms. They say that eventually RA shows up in the antibodies but not necessarily in time to be taken seriously and get treatment.

Some people have non-erosive RA - I do I think. However I don't think this means it will stay non-erosive forever - it simply means that the disease is different and slips around playing with other parts than the joints and is more in the connective tissue for me. This apparently causes slower damage but can affect the organs or change shape to become another related disease such as Sjogrens or Lupus I believe.

Someone here did mention a type of monocyclic RA which only lasts a few years - but no one I've spoken to, from NRAS staff to rheumatologists appear to acknowledge this type so perhaps it wasn't really RA to begin with - more likely a reactive arthritis which presented with positive bloods? I do know two people who have experienced this.

On the plus side the seropositive erosive types can respond very well to disease modifying drugs and anti-tnfs and tend to get taken more seriously because they are recognised more easily and treated aggressively.

The seronegative thing is a nightmare often because it can take years to convince GPs and consultants that anything is actually wrong - by which time irreversible damage has often occurred.

Hope this helps a bit. Twitchy

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Thanks for the reply Twitchtoes. It all sounds very complicated! No idea what I am !!

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It's a good idea to just ask next time you see your rheumy and also to get print outs of things and read up. I like to be in control of my health problems as much as possible but I know some just leave it all to the doctors. I have some sympathy with this approach too because its what I did with my hypothyroid disease for many years before RA started.

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I see the rheumatologist every 6 months but I dont have a Rheumy nurse and my GP doesn't know much more and doesn't seem interested ! That's if you happen. To see the same one twice.!

[nomoreheels]

Hiya Magnolia25. Maybe reading the following link will help you somewhat or at least show you of the differences between seronegative & seropositive before asking your Rheumy which you have! I was fortunate to have a Consultant who explained in detail what I have & the implications of being seropositive but I know not every Rheumy does. nras.org.uk/seropositive-se...

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Nomoreheels

Thank you for your reply. I wonder why, after 10 years of seeing the rheumatologist, zero positive or zero negative has never been mentioned

[nomoreheels in reply to Hidden]

Some Rheumys don't either consider it necessary to inform their patients or simply forget. Maybe it was mentioned along with lots of other unfamiliar terms at your first appointment?

Easily missed if you're not au fait with Rheumy speak!

Have you ever asked to be copied in on the report letter your Rheumy sends to your GP? If so you should find it mentioned on your initial diagnosis letter. Mine always lists when I was diagnosed, what the diagnosis was plus any other non RD but relative conditions, procedures & operations plus my ever growing list of meds before going into her findings at the appointment, treatment plan & anything in the way of testing, reviewing or montoring she wishes my GP to perform. All very handy to have, especially as there is little else in the way of correspondence to track my progress! I have a file full of test results, imaging, internal letters Consultant to Consultant etc from my treatment abroad as everyone is expected to hold their own record of treatments. From my Rheumy here I have 5 report letters to my GP plus referrals & I wouldn't have the report letters if I hadn't requested them & have needed to chase up her secretary for those even though I've seen her write cc to me on her notes!

Anyway, ask & you should receive.