lupus and UCTD
I was wondering what the difference is between Undifferentiated Connective Tissue Disease and Lupus. My rheumy keeps vacillating between the two ...first I have one, then I have the other, now I have Lupus but we'll call it UCTD (so says the doc). Most of my symptoms have gone now that I'm on prednisone and plaquenil but the fatigue remains. The rheumy is now testing me for other causes of fatigue i.e. thyroid and anemia.
So I guess I'm just wondering if it can be determined which I actually have and what is the difference and will this fatigue ever go away??
My doctor does the same thing and it drives me crazy! He says he thinks I have Lupus but says we'll just call it UCTD because the insurance companies don't know what it is and he doesn't want me to be labeled. It's like the doctor's think they are doing you a favor, but I think it does more emotional damage than any good. Iíve seen several doctors over 12 years and they all say the same thing about a diagnosis - let's just call it UCTD.
I've tried to up my life insurance and insurance companies don't care what you call the disease they just ask you what drugs you take and questions like have you had a blood clot ect. which I have. I think the whole UCTD is a cop out for most doctors. When the symptoms get bad enough to have to be treated with prednisone and immunosuppressants, I really don't understand the big hesitation in a Lupus diagnosis.
Iíve had symptoms for 12 years, have had issues with multiple organ systems, and 4 of the 11 criteria but they always find away to say well this symptom may not have been quite bad enough to count. Iíve had protein in my urine several years before. It went away without treatment and I havenít had large amounts since Ė so they say it doesnít count. I was 16 when I had the protein in my urine and Iím pretty sure itís not normal for a 16 year old to put out 450 mg of protein in 24 hours. Can the kidney issues come and go? I have had smaller amounts of protein sporadically come and go since but nothing really high. My cheeks and nose turn reddish pink when I donít feel good Ė but then theyíll say well it may not be red enough. I get mouth sores all the time and Iíve had a positive ANA for 12 years. One ANA test was as high as 1:1280. Those are just the symptoms that fit the criteria that doesnít count the numerous other problems like Raynaudís, blood clots, livedo, horrible sores on my feet, muscle pain and weakness Ė to the point of not being able to walk. I think their issue with giving me a diagnosis is that I donít have sever joint pain Ė my joints hurt but they are red and hot, and I donít have a positive anti-DNA. Neither of which you have to have for Lupus but usually do have if you have Lupus.
I think doctors need to be more open minded about how to diagnosis Lupus especially after 12 years of symptoms that scream Lupus!
Sorry about the long rant!
I'm sorry you're so frustrated. At least you have us to commiserate with
I'm still wondering tho ...what is the difference between UCTD and Lupus? Does anyone know?
SOMETIMES DOCS USE THIS LABEL WHEN YOU HAVE AN "OVERLAP
In other words, you might have symptoms of more than connective tissue disorder. the doctors know you have a CTD , but not which specific one. Don't confuse UCTD with MCTD (mixed connective tissue disorder), which has very specific criteria for diagnosis. The problem is that so many diseases have symptoms similar to lupus, and a positive ANA can occur in other diseases besides lupus. In fact, many relatives of people with lupus have an elevated ANA even though they have no symptoms of lupus. Sometimes people with UCTD are given a more definite diagnosis later. My original diagnosis was UCTD because I had lupus symptoms and a very high ANA (1:10240) as well as other high antibody levels, but I also had very high levels of rheumatoid factor, and the antibody for scleroderma, After two years and dozens of tests, my final diagnosis was severe CNS and lupus nephritis, with scleroderma overlap, antiphospholipid antibody syndrome, Sjogrens, Reynauds, CREST syndrome, and bilateral sensory-motor poly-neuropathy. There is one good thing about the UCTD diagnosis - no one knows what it is, so you don't have to hear how somebody's cousin once removed had the exact same thing and either: A) did just fine, so why are you so sick? or B) died horribly, oh, you poor thing. Funny how it's always one or the other.