hhmmm...checking through the roll call it seems that Reine is the only one with both (well JRA and EDS)...
and I had to have 'negative' rheumatoid factor and ana tests before being referred to EDS specialist...

so they dont seem to 'go together'...but... a friend of mine has just had her EDS dx(7on beighton score, skin signs,subluxes, pain in non swollen joints...etc) thrown out cause she has a high rheumatoid factor (which as I understand does not necessarily mean RA, but she gets some swollen stiff painful joints that are helped by nsaids...)...

I'm happy that they are investigating where the rf might stem from...but a bit dismayed that they just threw out the EDS...???

so, anyone else out there with RA and EDS?
xxg

Well i guees i don't count huh?

This is hard since I got my JRA dx long before my EDS one...but did you know...

that RA, Lupus etc are called COLLAGEN VASCULAR DISEASES???????

OOOOH....

My doc told me EDS or not my fingers would subluxate and any other affected joints by the JRA...but the ones that aren't affected shouldn't be...and I have only had a positive ANA for the past year or so.

A lot of people with EDS have a pos. ANA...there are THREE kids in CT who have BOTH EDS AND JRA.

I think there's a connection...as does my geneticist. He told me that i'd have RA...but if i didn't have EDS I would have gotten it later in his opinion. Doesn't mean that everyone with JRA has EDS but the risk seems higher for those who do to have a form of JA.

JRA sucks. EDS sucks. Having them both doubly sucks.

Not to mention it confuses the crap out of my poor rheumy...who can't go by my pain really...and is waiting for my EDS specialist to give the call on whether my JRA should be treated with Sulfazine or not...because she is not sure WTF is going on with my rheumatic stuff.

Hmm...there's someone on the board who has EDS and SLE...my mom has EDS and SLE but she got the SLE dx like 20 years before the EDS one.

*******The question is: Did the subluxes etc PREDATE the arthritis??????*******

Because my docs blame a lot of instability on my JRA and not on my EDS...until I was Dxed.

you sure DO count...hey you even got a name check

and 'good' (well you know what I mean...) to know there are others...
I'll keep my friend informed!
thanks!
anyone else?
xxg

Just a little fyi. As far as I know there is no association between EDS and RA. That said, there's no exclusion either (i.e. just because you have one does not mean you cannot have the other). And so it's possible but unlikely to actually have both.

That said, there is a definite overlap of symptoms between EDS and RA - both being connective tissue diseases that particularly affects the joints. Since no disease process is ever as clear in practice as it is in theory - it often happens that someone may be misdiagnosed initially due to a lack of certain criteria or expertise. RA may sometimes be mistaken for EDS and vice versa. And sometimes, it may be impossible to conclusively determine whether it's EDS or RA or both, particularly in the early stages.

I wouldn't be too worried about the particular diagnosis. As long as treatment is directed appropriately (i.e. treating inflammation if it's present and not treating it if it isn't there) and at least one of the diagnoses is accepted, I don't think the name is all that important if you are under the care of a rheumatologist familiar with both.

Well Dee you wouldn't treat EDS pain flares with Pred or MTX

I def have JRA...nodules and synovitis to prove it...even without the pos ANA. I'm a rare case as I was dxed with Seronegative JRA!!!!! Which only one in five kids with JRA has.

The other two kids with EDS and JRA in CT that i've heard of...one has had several failed surgeries and joint replacements prior to EDS dx and the other can barely walk from the effects of both.

It's a HORRIBLE conbination. Because they play off each other. I was told that I'd achieve JRA remission and most likely stay in it...WRONG. My rheumy now told me I'll be one who will never have remission simply because my immune system is reacting to EDS joint injury. And the JRA in turn will make my dislocations/subluxations worse and more frequent.

Crap.

A connection has been made between EDS and Collagen Vascular Diseases...it's a rare connection...but it is one. Similar to how a pain clinic saw four RSD/CRPS patients and they all were dxed with EDS later by geneticists...the RSD/CRPS appeared after EDS related injury and surgery.

RA is a mystery...but EDS is an even bigger one. The more research being done the more connections they're making...as they realize how important collagen REALLY is.

***And yeah the proper Dx is important...because I was doing PT tailored to my JRA...which wrecked my EDS affected joints. Also my rheumy is deciding whether to Rx Sulfa for me but can't tell where the JRA ends and the EDS begins and the other way around...and Dr. F will help her with that. The treatments for the two conditions are starkly different in regards to meds and PT...and even lifestyle changes.***

thank you peops!
I'll pass this thread on to my friend!
xxg

Coming in late with this discussion, but I definitely have both EDS and RA. My RA was diagnosed 27 years ago (I'm in a motorized wheelchair now) and my EDS, long suspected, was diagnosed last year after my daughter was diagnosed.
Kathy

Hi.