Undifferentiated Connective Tissue Disease

815 Views 15 Replies 11 Participants Last post by miss_gladys, Oct 30, 2008

miss_gladys

Discussion Starter · Oct 20, 2008

OK... after having a Sural Nerve and Muscle Biopsy, my Rheumatologist has now come to the conclusion (after my my first Rheumatologist diagnosed me with Lupus) that this is what I have. He has long suspected I have vasculitis and was convinced it was Wegener's Disease. He is doubtful of Lupus because of a negative ANA. I have been on Plaquenil for over a year. He says I have more than one thing going on, definitely.

I take a daily dose of antibiotic because I have a problem fighting infections (respiratory). I've also been on low dose steriods which also help me breathe better too.

Anyway, has anyone else been diagnosed with this? Does it eventually lead to anything definite?

Thanks!

1 - 16 of 16 Posts

LolaLola

· #2 · Oct 20, 2008

Dear Miss Gladys,
I am no expert on UCTD, but my understanding is that the treatments are much the same as for Lupus, it is a genuine recognised illness.It is pretty much just a name and what matters more is getting the right treatment. I would have thought Plaquenil would be a good medication for you, has this ever been mentioned?
x lola

wifajax

· #3 · Oct 20, 2008

Hello!

UCTD is my official diagnosis, too. It is a stand-alone diagnosis that is recognized throughout the medical community. Those of us with UCTD have signs and symptoms of a connective tissue disease (lupus, Sjogren's, RA, polymyosits, Raynaud's, etc) but do not meet enough criteria to conclusively diagnose one (or more) of them. In my case, everything is pointing to lupus, but the rheumy does not feel I meet four criteria at this time. Many people diagnosed with UCTD will never progress to a specific autoimmune disease, although certainly some do.

The treatment for UCTD is generally the same as "mild" lupus or RA...Plaquenil and anti-inflammatories.

Feel free to PM me if you'd like ay other information.

Terri

squeaky

· #4 · Oct 21, 2008

Hi miss gladys,
That is what my Rheumatologist has me down for to.
As Terri says it is when you have several things that appear to be going on at the same time but not 'ticking enough boxes' for any one thing.
I am happy to live with that as the treatment is the same. I have been on Plaquenil for a year and Amitriptyline for over six months now( this is to help as I used to wake in pain in the night and then not get back to sleep again)
I think this has helped energy levels, so hope this would help you too.
On another note a diagnosis of uctd is a lot cheaper when it comes to holiday insurance etc.!!
Hope you are feeling better now.
best wishes
Sue

nemo_importante

· #5 · Oct 22, 2008

Hi

I also have UCTD. When at first diagnosed with this I felt that it was a bit of a non-diagnosis, but now as others have said I realise that it is very much a stand alone diagnosis. In my case my symptoms are a mixture of lupus and scleroderma. My latest is that they are trying to diagnose me as having a 'scleroderma' gut! The treatment is very much the same as with other connective tissue diseases. I take a low dose of prednisalone and azathioprine. My rheumatologist always takes notice of any new symptoms and investigates them. The only problem I have had with the diagnosis is that not all medical practitioners have heard of UCTD, so I have to convince them it is a real condition and explain what it is! I also have psoriatic arthritis and find that Dr's always try to go for that as a diagnosis and try to ignore my UCTD. UCTD can sometimes end up being rediagnosed as something like lupus, but can just stay as UCTD.

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Jesse88

· #6 · Oct 22, 2008

Up until recently I also was dxd with UCTD and learned that it could stay that way permanently or could morph into something more definitive. I've recently "graduated" to Sjogren's and lupus even though I've been on Plaquenil and MTX since the beginning. I'm hoping Imuran will be the drug that finally gets this business under control. On one hand I was glad to have a more definite name for what was going on, but on the other hand, I wish that I still had UCTD because it's generally believed to be a bit more benign than full blown lupus, Sjogrens, etc.

karenj7777

· #7 · Oct 22, 2008

Hi
Do they attribute the respiratory issues as part of the CTD or as another illness combined with it? I think many drs feel comfortable with this diagnosis due to not wanting to misdiagnose you and end up getting sued. Sad but true.
Like everyone said though the treatments are pretty much the same so that's the important thing. You should have comfort the muscle biopsy didn't show anything else. I need to have one and keep putting it off as i suspect they will still find it's just Lupus. Good Luck.

miss_gladys

Discussion Starter · #8 · Oct 22, 2008

Uctd

My doctors were all attributing my respirtory issues to vasculitis; particularly Wegener's disease. In fact, my rheumatologist was convinced the sural nerve biopsy would show this. The past several visits he always writes vasculitis on all my blood work and receipts as my diagnosis. I always test positive for P-anca (although C-anca is for wegeners) along with many other indicators that were leading my rheumy, pulmonologist, nephrolosit and ent and gp to this diagnosis. My whole illness began with being diagnosed with asthma and sinus problems. Then it went into fatigue and joint problems.

Since having this biopsy, I am happy it is not in my muscle or nerves but a bit frustrated. I am still being treated as if I have vasculitis. My rheumy is sending me back to my pulmonologist because he says my breathing is not right. He wants me back on steroids. I also take a daily dose of Bactrim DS. Bactrim and Prednisone is the standard treatment for maintaining Wegener's Disease and the Plaquenil and Mobic I take is treatment I was given for Lupus.

So...UCTD???? What should I think? LOL

Michelle

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Lily

· #9 · Oct 23, 2008

Hi Michelle

It seems there are quite a few different diseases which can be present when the p-anca is detected. Do you know what type of staining pattern it was - normal or atypical? That narrows it down a bit but not that much

Here's a site which is quite detailed on the ANCA test and what it could mean:

http://www.ifcc.org/index.php?option=com_content&task=view&id=346&Itemid=31

Don't know if that will help or not but it may mean something to you.

love
Lily

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kcmmem

· #10 · Oct 29, 2008

me too...kind of

My dr mentioned UCTD in my last visit with him. He thinks that it could be leading up to Lupus. As strange as it sounds, I am elated that he finally put a name to it and awknowledged that I have as issue. Unfortunately, he is not longer my doc. I had been on Plaquinil for over a year and it did not help. I have to be careful about taking anti inflamitory medications due to APS and being prone to blood clots. This means trying to deal with the pain until I can get into see my new rheumy. I just hope that she will help me. It is getting cold and I am in so much pain.

Jesse88

· #11 · Oct 29, 2008

kc: It doesn't sound strange that you're so happy to have a name, even if it's a bad name. There's something about not having a specific label that is so unsettling. When you have a name to put with the disease, it helps to make you feel more in control. You have a bit more information to help you and your doctor take the appropriate steps to get your disease under control. Completely understandable.

Is there no other doctor who can prescribe something for your pain until you get in to see the RD?

kcmmem

· #12 · Oct 29, 2008

I am no longer under that dr's care and i have not seen the new one yet. I have no one to prescribe anything to me. I use Lidocain patches every now and then when I cannot handle it. I have to hold out for 3 more weeks (god help me). Lyrica sometimes takes a small amount of the edge off but not much. I sleep better on it but it upsets my stomach

lullrich76

· #13 · Oct 30, 2008

I also am diagnosed with UCTD since 2004...I had symptoms for longer than that. I am a mix a lupus, sjogren's, and raynauds. I do find that a lot of health professionals don't know what it means and I have to explain it to them.

mommygiraffe

· #14 · Oct 30, 2008

I have mixed connective tissue disease, kinda the samething as uctd, I think. I'm not sure anymore. I've been on imuran and plaquenil for years til July, when the imuran gave me anemia and put me in the hospital for blood transfusions. Now I am on methotrexate and possibly adding orencia in Dec. I have fibromyalgia too, and Behcet's, another autoimmune. I am in a horrible flare right now. I take avinza for pain, a 24hr release morphine drug. My rheumy upped my dose, and that is helping quite a bit. This is not the club you want to be in, but it is great to have a name for what you have. Explaining the mix of symptoms from other autoimmunes part but not being any one of the three, to others, not so fun. I've had the name for two or three years. Before that they thought it was lupus, and before that it was rheumatoid arthritis. plus the Behcet's and fibromyalgia, plus diabetes. yea. My rheumy says mine is "mostly lupus". fun.

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nemo_importante

· #15 · Oct 30, 2008

Hi

Mine is generally termed UCTD, but at times is called MCTD or overlap, depending what my bloods are doing. Mine is a mixture of lupus and scleroderma. I also have psoriatic arthritis. Explaining it to people is the interesting bit. I find Dr's often don't know what it is and are happier talking about my arthritis as this is something they have heard of. I do agree it is good to get a label. I spent years knowing there was something wrong without getting a diagnosis. It is so much less stressful when you have a name for what is wrong.

miss_gladys

Discussion Starter · #16 · Oct 30, 2008

Having a "label"

I'm so glad to hear I'm not the only one who feels relieved (?) to have a label.
It's so difficult to explain to people what's wrong with you. My own family doesn't even understand what UCTD is. My poor husband sees when I'm sick but even has a hard time explaining it. What cracks me up is how the doctors can change your diagnosis on at each visit based on your symptoms and blood results each time your there. I've have had SLE, Vasculitis, Wegeners, Connective Tissue Disease, UCTD, Polyarthargia, and others written. Gee, what will it be next time? Just wish it could be something definite.

Oh, and my favorite statement about UCTD so far has been, "it could all just go away". Well, it's been over 4 years now with identified symptoms. But of course, not enough critieria for a definite diagnosis!

After having my sural nerve and muscle biopsy (which showed no inflammation, thankfully), I told my rheumy I just might stop all my meds to see what would happen. He told me, "Well, you could but you might end up in the hospital, but then again, we might be able to find out what's going on a little quicker. Not funny.

Well, thanks for letting me vent!

Michelle

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