If you have a diagnosis of inflammatory arthritis,should you ask doc to say what type of arthritis it is/may be?

[Ellenkay]

A rheumy nurse told me earlier this year that a dx of inflammatory arthritis is a sort of catch-all until they know what arthritis they are dealing with. I am sero-negative for RA, but do have ulnar drift......

[Hidden]

I think the answer you are most likely to get is along the lines of 'it doesn't matter because the treatment's the same no matter what type it is.' But if you want more clarity then I think you should ask & perhaps press your Rheumy to at least hazard an educated guess as to the most likely type.

Being sero-negative for RA does not mean that you don't have RA. I'm sero-negative on all counts & while my Rheumy favours a diagnosis of RA he does say that any new symptoms - for example spinal involvement - might change the diagnosis.

Have you looked up symptoms of other forms of inflammatory arthritis? I think if you do so with a completely open mind you might come to some fairly firm conclusions yourself. I don't know what the significance of ulnar drift is .... is that a specifically RA thing? I wouldn't know my ulnar from my elbow!

Luce xx

[Ellenkay]

Hi Luce,

Thanks for your answer... the ulnar drift thing is when your fingers start pointing away from your thumbs and off the straight forward line.... I believe it is fairly specific to RA.

I think you have very accurately stated what my rheumy will say to me at the end of the month!!! lol.

I shall look up the other types of inflammatory arthritis, thank you

Ellen xx

[helixhelix]

Sometimes it takes a while for the full nature of the beast to show itself, so the docs use undifferentiated inflammatory arthritis as a fallback until they can be sure. But if you are showing physical signs then it does sound as if you are further along the road so I don't see why they can't give you a bit more of a clue. As Luce says, it may not make any difference at all in terms of what is recommended as treatment but I find it helps me to have a firm diagnosis and know what I'm dealing with. There are so many strange symptoms of the disease and the drugs that knowing what you have can also help sort out what things you should worry about, and what things are irritating but can be ignored. Ask away! Polly

[Ellenkay in reply to helixhelix]

Thank you Polly x

[earthwitch]

I'm not sure about ulnar drift just being RA. I got told it was common in OA too, and PsA can also show that kind of deformity.

I think it would be useful to ask whether your inflammatory arthritis is more likely seroneg RA, or more likely spondyloarthritis (of one form or another). Spondy is treated a bit different from RA, in that DMARDs don't usually do a lot for it, but NSAIDs can do wonders. Also with spondy, it is a slightly different set of criteria to then move onto antitnf drugs if you need them (as most folk can't keep on taking NSAIDs for many years). Spondy is a lot harder to diagnose and it does seem that an awful lot of folk sit in a kind of inflammatory arthritis limboland, being prescribed DMARDs that don't really help a lot, when it could actually be spondy, so I think it pays to be a little bit assertive about getting a diagnosis. If you are being seen regularly (at least every three months) then having a diagnosis right now isn't quite so important, because the rheumatologist will be able to keep a fairly close eye on how things are developing, whereas if you aren't going to be seen again for 6 months or more, then you really do need to know what you are being treated for, and that there is a good chance of the diagnosis being right.

[Ellenkay in reply to earthwitch]

Thank you x

[Hidden]

I agree with Earthwitch on the point that it matters if you aren't being monitored closely much more. But I also think that in reality many of us sit in limbo of a firm diagnosis and this isn't anyone's fault - these IA diseases lack certainty - that's the nature of the beast!

I did do some research on the Arthritis Care forum a while ago into ulnar drift and it really doesn't seem to go with OA at all - its the main visual characteristic that distinguishes them actually. I can't say about PsA, but I think its a fairly strong characteristic of RA whatever - as are swollen knuckles - the two seem to go together for me although I do also have OA in my hands - mainly in top finger joints (DIPs). My rheumy told me that I should keep an open mind but he was giving a working diagnosis of RA. When I saw him again last July (8 months after diagnosis) he agreed that this still applies but also that I still have RA in his opinion. I think it helps psychologically to have a name - and also to access support if you are struggling with employers and benefits etc - but beyond that we are all in the same big inflammatory arthritis boat - welcome aboard! Tilda x

[Ellenkay in reply to Hidden]

Thank you Tilda x

[earthwitch in reply to Hidden]

Interesting what your research has said about ulnar drift. I'm sure I came up with the same info myself, but I have it too, and I've been clearly told that its just OA. I don't entirely believe it though, as the pain in those specific joints responds far too well to antiinflammatories.

[Ellenkay]

Thank you ladies for your helpful comments.... all ammunition for my next rheumy visit (interesting choice of word, that.... do I really think I am at war....?).

You may be interested (or horrified) to know that I am on no medication whatsoever apart from co-codamol or paracetamol .... dmards, steriods and nsaids are a problem with regard to a bleeding disorder I have.... which appeared at the same time as my IA symptoms...

I am really in the middle of a nightmare ....

xx

[Hidden]

Oh heck poor you! Is the blood disorder linked with your autoimmune system I.e Vasculitis or something similar? If you need a proper diagnosis in order to qualify for dmards etc then you must get all the ammunition in place I agree. But bear in mind that some of these drugs are cytotoxic as I'm sure you know - as this might have a bearing on your blood condition so maybe why they are going slow? Others on here with inflammatory arthritis are on DMARDs now so the vague definition can't be a reason for no treatments yet I wouldn't think? Tx

[Ellenkay in reply to Hidden]

Hi Tilda - thank you .... I'll know more about everything after my next meeting, finger's crossed!! No one can definitely state why I have a blood disorder, however, it is possible that it is linked with auto immune disease. It is a rare disorder.

Have a good weekend x

[Hidden]

Ellenkay from what I've read, the sooner you are on some sort of meds the sooner you stop the progression of destruction to the joints and thats with IA as well as RA. I think Tilda has a point there, do you have a bleeding disorder that wont be linked to the auto-immune diseases? Dont lose heart tho, there are over 150 meds out there to treat RA/IA, so fingers crossed one will suit your body with interfering with the coag problem.

I'm not a doc so I might be wrong and I hope I am telling you the right thing... I think ulnar drift is because the knuckle joint (MCP) is eroded away on the little finger side of each knuckle which makes the tendon slack and glide off its usual tracking. The tendon then pulls the fingers towards the little finger (or ulnar) side of the hand.

Every joint has a "synovium" which lubricates the joint and at the ends of each tendon is a 'tendon sheath' which also helps the joint to move. Because RA attacks and inflames the synovium and tendon sheaths and in turn will cause the joint to erode away, then untreated RA is usually the reason that ulnar drift appears. But any disease involving synovitis can do this which is why you see it in spondy (SpA) and other tendinopathies (diseased tendons). Usually in OA its the cartilage thats worn away because of wear and tear and thats why the joint collapses so for some reason its less likely to be seen in OA although its not unheard of.

Best of luck sorting though it.

-gail

[Ellenkay]

Hi Gail - Thanks for your informative answer... it all helps.

Next rheumy appointment coming up fast...!!

All the best to you x

[Hidden]

from my experience unless you have a specific title, mine is as yours. but now looking at connective tissue such as lupus it makes it less easy to qualify for biologics.. just got consultants letter on hol return and it is depressing .. passed das score but not enough swelling??!!

[Ellenkay]

Hi Summer,

That's very disappointing for you. How good it would be if we could just pop in and say 'look, very swollen today!!' rather than have to wait til appointments. Good luck to you x