Autoimmune Rheumatic Disorder

[Annalouk]

What does this mean exactly? I have all symptoms of lupus but have been diagnosed with this instead. It seems like a vague diagnosis...

[Hidden]

I have never heard of that I have psoriatic arthritis witch is a autoimmune disorder

[AnnNY]

I have had this for close to 40 years, and they are calling it undifferentiated connective disease, which sounds like bout the same as what they are saying to you. To be diagnosed with a specific disease you have to tick off specific boxes in tests and symptoms. They know you have something autoimmune, but you haven't ticked off all the boxes for a specific illness. A lot of treatment is the same, and it can help the diagnosis if treatment helps you. I would like an exact diagnosis, but I am getting treated. The immune system is amazingly complex, so it isn't surprising that some of us don't quite fit in to one disease.

[PMRpro]

It used to be that there were "named" diseases - usually a doctor had had a few patients with very similar stories and decided they belonged together. They wrote a paper or two and gave it a name - more often than not theirs! Wegener's, Sjogren's, Hashimoto's and a whole load of others and their names went down in history! We're talking of many years ago when they didn't have access to laboratories, histopathology, blood testing, imaging so it mostly was to do with how the patients presented., their symptoms. When they died, they could have a post mortem and sometimes found some damage to organs which told them more.

More recently the new sophisticated imaging techniques and laboratory tests have identified things specific to various presentations and new names have been worked out - many based on what they find in the blood and in tissues. But sometimes they are even more vague in some ways. Autoimmune disorders often overlap: you can have vasculitis (inflamed blood vessels) that leads to rheumatism-like symptoms (soft tissue, muscles and tendons/ligaments. Or arthritis (joints). Or various connective tissue problems (like Ann) but with nothing really specific. Then they call things "non-specific" or "overlap". The treatments tend to be based on what they can see so it doesn't really make much difference. They have to have a label to put on the lab requests or the notes.

They treat according to what they find and then try what appears to be the most appropriate medication. If it works, all well and good. If it doesn't they try something else. Until the real mechanism of a disease is known and understood they can't cure or work out a cure - although sometimes they find something that works really well by accident. That's the trouble with autoimmune disorders - they are very complex. Yes, it sounds vague, but its probably all they know at the moment. Don't worry about it, you will get the best that is available and maybe one day they will be able to tell you more.

[Hidden]

It may be that the name is reflective of which bloods you were positive (which ones do you know?) along with the telltale presentations and other test results?

[Fennella02]

Hi

Like you I have a very Lupus like presentation but very little in the way of antibodies to support this as a diagnosis. I have had a Dx of lupus for well over 25 years but a recent review by a professor States 'an auto immune rheumatological disease best described as UCTD' but my Rheumy uses SLE/UCTD to describe me. Treatment is the same but it's important to remember that disease progression can be less predictable.

Hope this helps a little. Clare

[Purpletop]

It's a cop-out, just saying that you've got some autoimmune disease but not sure what yet, probably many symptoms overlap and blood tests are not conclusive. Treatment is the same across the very broad spectrum of AI diseases, so as long as they put you on it, label becomes less important.

[Paul_Howard Partner LUPUS UK]

Hi Annalouk,

As many of others have helpfully said, it sounds as though you are presenting with clinical markers for an autoimmune/rheumatic condition, but perhaps not enough markers at present for a definitive diagnosis. Have you been started on any treatment? When were you given this diagnosis?