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Hi everyone,

I was diagnosed with lupus in february 2007 by my GP and she referred my to the rheumatology department at St. Thomas hospital, and they confirmed the diagnosis. I was then referred to the Lupus Unit at St. Thomas hospital and they diagnosed me with(quoting): 'Mild Lupus (ANA positive, lupus anticoagulant positive twice, joint pain, photosensitivity, mouth ulcers and hair loss)'.

This was back in October last year and I was put on 10mg of prednisolone on top of the plaquenil and the aspirin that I was already on.

I had my 2nd appointment at the lupus unit in April and I just got the letter summing up my appointment this saturday. Now all of a sudden the diagnosis is: Undifferentiated connective tissue disease and microscopic haematuria

I am more than a bit confused. What happened? And why hasn't anyone contacted me to tell me what the h... is going on? Sorry I just feel like I'm back to square one. I have been ill for almost 10 years and I had to fight to get the doctors to understand that something was wrong and it wasn't just stress.

My next appointment is in June 2010, and I feel really powerless and confused and I just need someone to explain this to me. Sorry for the rant, if someone could give me some advise, I would greatly appreciate it.

Take care,
Ana
 

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Hello Ana,

I'm sorry to hear that you got such a confusing letter. It is odd that they changed their diagnosis from SLE to UCTD. The only possible reason that I can think of is that an SLE diagnosis can have relatively heavy consequences on things like insurance etc. and that is less the case with UCTD.

"Mild" lupus simply means that it is lupus without major organ involvement. It is an unfortunate term as the symptoms are far from mild for those suffering from it.

UCTD is a diagnosis that is sometimes given when the criteria for SLE are not sufficiently filled but that it is clear that auto-immune connective tissue disease activity is going on.

The treatment for UCTD and SLE are the same and for many people who get that diagnosis earlier on, it has little importance as they are being correctly treated.

I certainly wouldn't worry too much about it now but if it is worrying you then I would make sure that I asked the consultant why that change was made. These things often mean very little in medical terms but they can be extremely distressing for the patient.

hugs :hug:
Katharine
 

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Hello Ana
Undifferentiated CTD is simply another term for ' mild lupus' which means lupus with no major organ involvement. It is a bit more technical because it means there are no lupus specific signs. I am quite sure that many doctors will less precisely diagnose ' lupus' as a general term. A person is more likely to get a more specific diagnois in a major lupus centre where they are more pernickety

It doesn't make any difference to treatment. It's a better diagnosis to have than SLE because an SLE diagnosis brings major problems with getting insurance.

Statistically, people with a UCTD diagnosis are less likely to develop severe SLE with organ involvement. When it comes to telling people what disease you've got just continue to say lupus

All the best
Clare
 

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Hi Ana

I just wanted to reassure you that, as both Katherine and Clare have advised - nothing has really changed in terms of your diagnosis and treatment.

When I was first diagnosed at the Lupus Centre at London Bridge Hospital - the Consultant advised that I clearly had a inflammatory connective tissue disease of autoimmune origin, which he would call "undifferentiated connective tissue disease" - but that I could refer to, with his blessing, as lupus.

Either way, the treatment is absolutely the same.

Take care

Merle
 

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The Other Illinois Tammy
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Ana,
I do understand why you are confused, anyone would be. Have you a chance to call someone at the hospital that seen you to have them explain the changed dx from the last visit? Was there other or new tests done this time? Have they changed your treatment much or is it pretty much the same from the last visit? I am just full of questions for you, sorry.

The treatment for either one is pretty much the same, the difference is the name and that lupus is more defined than the UCTD is. It also could be that they are wanting to look closely at things before really putting that label of lupus on your chart. Once you have it well, it is not like there is a cure for it or anything. Your gp or rhuemy should of gotten a report to the findings that maybe yet another way to go for some information on why the change in dx.

I do hope you are feeling better soon and that you find the answer to why, but don't let it run your life trying to find out. You do have something and it is real and there is medicine for it.
 

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Hi Ana,

Welcome to a great place where you will find support, compassion and people filled with knowledge and are ready to share.

I understand your frustration with the label placed on your diagnosis yet the meds are the same to treat these auto immune disease.

Honestly, UCTD is better on paper then Lupus when it comes to getting insurance and other things too.

Don't fret too much about what is written down on paper. Obviously with a dx of UCTD the doctors know your not well and what you need to focus on is getting on meds to help you feel better.

Nice to meet you and come join us in the chat room sometime.:wink2:
 
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