Confused UCTD or Lupus interchangable
New here so I'll give you some background:
I have been dealing with strange symptoms for two years. Back and forth to GP with no diagnosis other than maybe you’re depressed. On my last visit I actually told her if she mentioned depression one more time to me I was going to punch her!
Three weeks before Christmas 2012 I got really sick. I was so tired, severe brain fog and my hands and feet where changing all kinds of funky colors. My neck swelled as well as the bottom right side of my face. I went to my GP which she ordered an immediate sono on my thyroid. Came back with nodule on left side and sent me to have a fine needle biopsy at local hospital. Test results came back negative. Assured me it wasn't thyroid cancer and wait to see if swelling decreases with time which it did. One month later I got extremely ill again. Barely out of bed, fever, rash, all my joints hurt, hair loss and I couldn't hang on to anything. I broke so many dishes I had to buy more. I demanded my GP to give me a referral out to see someone else. Finally appointment with Rheumy.
Feb. 2, had my first appointment. Usual evaluation, do this do that, look here look there. By the time I left I felt like a circus monkey! Doc said I definitely have some issues and ordered a slew of blood tests. Returned to find out his diagnosis was UCTD with symptoms leaning towards Lupus. That rang a bell; I have two aunts with lupus so was somewhat familiar with the term. Put my on Plaquenil 400 mg. and High dose of Vitamin D cause it was almost non-existent. Rheumy wants to know why my GP never did any extensive testing or referrals in the two years I've been seeing her for these issues knowing theres a family history of Lupus. Can you say incompetent?
I see the Rheumy every 6 weeks till this last visit on May 22nd. Doc noticed I have some swelling and tendonitis in my legs, feet and ankles. That would explain why my feet hurt so much. She wants me to take prednisone which scares me and maybe another drug depending on a blood test called TPMT? Go back June 19th.
Questions I have:
Do you ever get frustrated that every time you go back to the docs its never good news? How come my Rhemy uses UTCD and Lupus in the same visit? Which one is it? One minute he says thats common with Lupus and next he says UTCD. Why does my ANA test always come back inconclusive even though thier done at different labs? Rhemy said he thinks Lupus is playing pick-a-boo in my body. Is this possible? So many questions!
Yes, I think it is safe to say that everyone on this board has experienced frustration with a doctor's visit at some point.
But mainly I wanted to respond to your question about UCTD (this is a diagnosis that I, too, carry). UCTD -- Undifferentiated Connective Tissue Disease -- is what doctors call it when you have a systemic autoimmune disease, but you don't have enough features of any specific disease (such as lupus) to have that specific disease label. However, when you have UCTD, you may have features of a specific autoimmune disease. This is probably why your doctor mentioned lupus. You don't have the "right combination" of symptoms for him to say that you definitely have lupus -- hence, the UCTD label -- but your systemic autoimmune disease may "look" more like lupus than other diseases.
In my case, I have UCTD with features of both lupus and scleroderma. So when my rheumatologist is talking to me about my disease, she may mention that my disease "is acting like lupus" in one way and "looking a little like scleroderma" in another way, but I don't complete either of those specific disease pictures.
I have never had a positive ANA. My rheumatologist has said that a negative ANA doesn't mean you don't have a systemic autoimmune disease. Some people may have antibodies that have not been identified before and cannot be tested for. Or, you can have levels of antibodies so low that they're considered "normal" (and thus do not show up as positive on testing), but for your body, even the low level of antibodies is causing symptoms.
It's good that you're on Plaquenil. It's the first line of offense against an autoimmune disease that wants to cause trouble.
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Oh yes yes yes. Same here. I only found out that someone somewhere put lupus on my notes recently, and that was only by accident. Derrie is right about the way diagnosis works, they use UCTD to define that it isn't clinically diagnosable as Lupus, but something to do with the auto immune system etc.
It's a complete pest. From where I stand now I wish I had just labelled it Lupus in my head and lived with that instead of living in some kind of unhealthy wait-for-diagnosis-limbo. I, in my limited understanding, lived as if I had M.E. and although pacing is helpful, it meant that I was so self limiting. Where I could have been testing my limits a little more, I lived trying never to feel ill by limiting what I did. Of course, my lupus being relatively unpredictable, meant that I just limited myself more and more.
Doctors are so different, and lots of them make statements we might cling to, that other doctors sneer at and the whole thing becomes very confusing for the patient, (who, wasn't feeling very well in the first place!!)
I stopped going to a rheumatologist after one I saw told me that I felt ill because I had too many children and that I needed to rest well and eat more protein. It's frustrating, right at the beginning when I was 19 a doctor told me they were so certain I had lupus that they were treating me before any results came back, then my results came back, I never saw that doctor again and they sent me home on steroids.
Hang on in there!