Undifferentiated Connective Tissue Disease - confused

[Tassiewoo]

Three years ago I was told by Rheumatologist I have Lupus SLE, then a year I ago I started seeing a dermatologist as well and she said it is more UCTD. Even though I have majority of Lupus symptoms but test results keep fluctuating and no real defined conclusion to be Lupus SLE.  I am getting so confused and stressed by all this and it has had an impact on my health.  I have tried to read up on this but with so much on the websites it just get muddled and confusing. Can anyone please explain in simple terms what thus actually means.  I don't know how to explain it to my manager at work because of disability and support.  Now I feel a fraud because I was told Lupus. Many thanks.

[misty14]

Hi Tassiewoo

Sorry to read you are confused about your diagnosis. Not helpful!. UCTD is a collection of symptoms  that span RA, Scleroderma and Lupus. Our bodies can't make up there minds which CTD to be!. I've had this diagnosis for 29 years now but only recently have fully understood what it meant. I hope your getting treatment that's working. X

[Tassiewoo in reply to misty14]

Hi mist14. Thank you for your reply.  I'm currently on Hydroxychloroquine twice a day but thinking of putting me on an auto immune suppression called Azathioprine, but not sure when. What treatment are you on...if you don't mind me asking?x

[misty14 in reply to Tassiewoo]

Hi Tassiewoo

I just take Steroids now and Colchicine for chest pain . I used to take the immuno-suppressives  like Azathioprine, worked well!. Claiming benefits I've always written UCTD like lupus and not had a problem. The CAB have helped me with the forms so I'd strongly advise you get there help as they have to be filled in a certain way!. Sorry you have fibromyalgia too and I hope your Rheumy visit in June goes well. Keep us posted as going onto Aza is a big step. X

[Tassiewoo in reply to misty14]

Thank you misty14, I will post how it goes in June. X

[Fennella02]

Hi Tassiewoo

I was diagnosed with textbook lupus which I have had for nearly 30 years.  Information wasn't widely available back then so I didn't think too much about it, took the Pred and Hydroxy ( when I felt like it) and got on with life.  Things stayed much the same until a few years ago when new symptoms started to creep in.  I started Mycophenolate but my new Rheumy was unhappy with my lack of blood markers so requested a 2nd opinion from a Professor.  She recognised autoimmune Rheumatological disease but preferred to call it UCTD and treatment to remain the same.

My consultants (even Rheumy) still put SLE as my main diagnosis (sometimes SLE/UCTD) so there clearly isn't much difference in their opinion.  Why don't you use SLE/UCTD as your diagnosis?  You can then have a clear conscious.  It's important to remember with UCTD that its path can be less clearly defined.

Hope this helps.  Clare

[Tassiewoo in reply to Fennella02]

I'm due to see my Rheumy in June so I will ask if can be done.  It's difficult as I also suffer with fibromyalgia and my husband has to help me out of bed and I have never claimed to help as I work part time, reduced my hours due to tiredness and pain. I just so unsure how they would see me with such confusion over diagnosis, but worth asking about putting SLE/UCTD. Thank you for your reply.x

[PMRpro]

I think of it like this:

Once upon a time (decades and decades ago) many diseases were spotted in one or a few patients and described by someone who often gave it a name for posterity - very often theirs! Think Parkinson's, Cushing's, Addison's, Wegener's and so on. The same applied with many autoimmune disorders where they had some quite clear visible symptoms and over time more and more patients were assigned the same label. In the last 40 years technology has sped ahead and they have found all sorts of formerly invisible things that correlate with a given set of symptoms - and many diseases have been renamed on the basis of lab findings rather than just the syptoms. In some cases one disease has become several and in some cases several have been pooled under one heading. 

In UCTD there is no real unmistakeable label to identify an underlying cause of the symptoms, a lack of antibodies for example. So they treat the symptoms - which often means the treatment won't change but the label does. Like they change the name of your bank account - it still does the same thing, only the name has been changed to confuse the innocent.

[Tassiewoo in reply to PMRpro]

Hi PMRpro,

That is a very interesting way of putting it, makes sense, even my husband understood it better.  Why do things have to be so complex?!  Thank you.x

[PMRpro in reply to Tassiewoo]

If as a layperson I don't understand how a car engine works - what is the point of explaining it to me the way the mechanical engineer understands it! So medical-speak is not much use to the average patient - I've been turning one language into another for a long time! It isn't scientifically 100% - but it conveys the concept which is what matters and is important for the patient.

[Tassiewoo in reply to PMRpro]

So very true.  You would think that they would understand this.  I know I've sat and listenened and felt I should understand and i feel too embarrassed to ask questions, as have been made to feel stupid when I have done so in the past.  

[PMRpro in reply to Tassiewoo]

That is a sign of a poor doctor. I don't know what you or your husband do for a living. Whatever it is - I doubt a doctor could do it without training so they would be the person looking stupid if you treated them as they responded to you. There's no excuse - unless the doctor is arrogant, and that isn't an excuse either...

[AnnNY]

My diagnosis is lupus like UCTD.

Yesterday I went to my gynecologist after 3 years and she asked me what my diagnosis was, and I gave her this diagnosis. She said something like, "so you still don't have a diagnosis." I said, "No, according to the Hospital for Special Surgery this is a diagnosis and there is a big write up on their web site. I also said, I don't care what they call it or what my blood tests are as long as they treat it!" They definitely consider that I have done well on plaquenil, prednisone and methotrexate.

I think some of the reasons it is UCTD and not lupus are that my kidneys are good, my blood tests often show inflammation, but I am most often ANA negative, or low ANA positive, and I don't tick off enough of the boxes, all though different doctors have thought I did tick off enough of the boxes.

Anyway, here is what the say about it at HSS:

hss.edu/conditions_undiffer...

But if you tell your other doctors, they may still be confused by the diagnosis.

Anyway, you do have an immune disorder and they will treat it. It does seem it may take some time for this to get down to the wider medical world.

[Tassiewoo in reply to AnnNY]

Thank you for your great reply and the link, which was really informative.  It does get very confusing, especially when each specialist I see say something different. But this does help me understand it better. Many thanks.

[misty14 in reply to AnnNY]

Hi AnnNY

Just wanted to say that the explanation given on the Hss website re UCTD has so helped me undrstand it's more of a diagnosis than ever I thought. Had it now 29 years !. Thanks for sharing the link and glad your doing well on your treatment. X

[PMRpro in reply to AnnNY]

What a superb article - understandable for anyone without being patronising! Thank you - this isn't "my" field but things like that are very useful for use "at home" on the polymyalgia rheumatica forum. 

Unfortunately there are a lot of patients who think that if you have PMR symptoms it must be PMR - whereas the truth is that they are just the symptoms of the real disease and there are a lot. I suppose it is a bit like seeing silhouettes of mules, horses, zebras, donkeys and unicorns - even the unicorn looks similar if the head is out of focus. So someone comes on a forum and describes their symptoms and lots of people say "oh, definitely PMR" - but it may not be. Almost seems a shame we don't have a UCTD classification...

[AnnNY in reply to PMRpro]

Glad you all found it helpful. I didn't think my GP understood my diagnosis, so I printed it out for them. 

[Paul_Howard Partner LUPUS UK]

Hi Tassiewoo,

I have some useful information about Undifferentiated Connective Tissue Disease from 'The Lupus Encyclopedia' by Donald E. Thomas Jr. It is a bit much to type out, but if you send me you email address in a private message or email me at [e-mail] then I can scan the pages for you.

[Tassiewoo in reply to Paul_Howard]

I have sent you a message via email. Thank you.

[Bangoraye in reply to Paul_Howard]

Hi Paul please could I also have a copy of the info regarding uctd 'The Lupus Encyclopedia' by Donald E. Thomas Jr?

[Paul_Howard Partner LUPUS UK in reply to Bangoraye]

Hi Bangoraye , if you send me an email at [e-mail] then I can send it for you.