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Sky

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 #1 
I know this has been entertained on many threads. Curious if those who have been dx with CTD are on medications?? What treatment plan your doctor has you on?? And how were you dx?. Any organ involvement?
I'm extremely confused with this diagnosis. I have been treated for Lupus Nephritis for over 30 years. Now I'm in stage 3. Im now being told it does not look like lupus but a connective tissue disorder. I have the typical joint pain, extreme fatigue, sun sensitivity etc. I'm waiting for my written report from my visit last week to the specialist in autoimmune diseases, who concluded it's not lupus but more like CTD. I will contact my nephrologist and get his opinion. Is lupus a part of CTD? I'm thinking now what difference would it make what I have; but I feel a need to continue on with getting as much info as possible from all sources for the next generation.
There are very educated people on this chat board and maybe you can steer me into not getting compulsive in finding answers. And a need to explain what the rheumy said. It's like guess what family and friends I Don't Have Lupus! I need to get it out of my head that I think I have to explain in great detail for fear of them thinking it's all in my head.
upstater

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 #2 
Dolphin is right - lupus is a connective tissue disorder/disease. And there are several others, as she listed.

When you don't have enough features of any one CTD, the diagnosis is "UCTD" (undifferentiated connective tissue disease). It means you probably have some lab abnormalities and some symptoms - but it doesn't point to any one of the "defined diseases". It might always stay undifferentiated, or may some day evolve into a more specific disorder.

Then there is "MCTD" ("mixed connective tissues disease) which means that you have features of MORE than one CTD. They also refer to it as an "overlap disease" - usually features/combo of lupus/scleroderma/myositis.

I am dx with discoid lupus and UCTD. I am on Plaquenil, because it is supposed to be helpful with skin issues and also prevent further disease progression. I don't have organ involvement - at least that I am aware of!

I was diagnosed because I started having skin issues.....then some weird vascular stuff on fingers....and then some bloodwork. Oh....and a positive skin biopsy.

I would also think that the nephritis would point toward Lupus.


Sky

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 #3 
Thanks dolphin and upstater for the great info. It's starting to make sense. I didn't know about CTD or UCTD. Guess since I was dx in 1978 with lupus, I assumed that is what I have and never questioned it. I stopped plaqueniil for several years but started back on it six months ago. The rheumy I saw last week suggested that I keep taking it. I've kept most of my records including ones from my first dx through biopsy. I'm waiting for the consultation from last weeks visit and will schedule an appointment with my nephrologist. A lot of great info you shared and thanks for sharing your your story.
Autoimmune diseases are so complicated. Its hard having this disease as you know.
taffylinden

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 #4 

I'm unclear as to why this doctor decided it was NOT SLE when you meet at least 4 criteria, the minimum for SLE diagnosis from the checklist (which you can find on the LFA site). I'm guessing he or she is a rheumatologist who focuses on auto-immune disorders since there's no such specialty as an auto-immune. I'm not being snarky. I went to a rheumatologist last fall who focuses on lupus. I was very hopeful: at last! Someone who was a real expert and who could help me figure out what symptoms of many were lupus-related and which weren't, who could formulate a knowledgeable treatment plan! 

She was terrible. When I listed symptoms, she said, "But you're not having all of those RIGHT NOW." Oh, excuse me, I didn't realize I was supposed to wait until all the symptoms--which had been documented by other rheums--showed up at once before coming in. Then she said since most of my symptoms were eye-related (not true--vascular and derm-related, besides joint issues, fatigue, etc), I should tell the opthalmologists who treat me to put me on Humira. I explained--TWICE--that they refused to do so because they weren't experts in lupus and didn't want to do anything systemic. She ignored that and told me a third time to tell the eye docs to do so. Then she said I didn't have SLE, even though a rheumatologist and a dermatologist had separately diagnosed lupus after many years of study while I was deemed UCTD. (She completely ignored their opinions.)

Bottom line: I wouldn't automatically assume this new doc is right just because he focuses on lupus. I eventually contacted my old rheumatologist, and he seemed angry. He reviewed all the reasons for the diagnosis with me and offered to write the arrogant rheum a letter. I said don't bother, as I wouldn't be going back. 

Here's the thing: UCTD or lupus, they're both treated with the same meds. Docs really know very little about lupus--though that's more than they used to know, thanks to the LFA and other groups. Basically, they've taken 11 symptoms of the  vast constellation of symptoms SLE patients experience and said if you have 4 or more, you have  SLE. If you have only 2 or 3, you get a broader diagnosis. BUT there are various types of lupus, and SLE is only one. People with discoid lupus, cutaneous lupus, and other types also won't necessarily meet 4 of the 11 criteria. Not only that, but the original list of criteria came from a doc who looked at the most COMMON symptoms of lupus, not necessarily the defining symptoms.There's a lot of leeway and professional opinion that goes into the diagnosis.

The reason it mattered to me was I'd found telling an internist or PCP I had lupus made them nervous. During the many years I had the UCTD dx, docs looked nervous and puzzled. UCTD is even more amorphous than SLE. As little as is understood about SLE, even less is understood about UCTD, which is too often, in my opinion, a wastebasket term for when they know your body is attacking itself, but not precisely how or why. And there's even less research on it because it IS so big and vague. How do you even select subjects for a trial when symptoms are so wide-ranging?

An allergist I went to told me some docs like to prove they're superior to previous docs by disputing their diagnoses. He told me about a rheum who was on a big fibromyalgia kick, so a lot of his patients were diagnosed with that.

Honestly, I'd get another opinion. At the very least, you have a hung jury.

upstater

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 #5 
I feel like even among SLE - you could really break it out into numerous sub-diseases or diagnoses. That's why they call lupus "the great imitator" - because it has so many faces. That's the thing that makes me feel like it really could be broken out more. 

But I guess since the treatment would probably be the same....and is based often times on the symptoms - there isn't much point or energy in that.

I agree with Taffy. I'd see another doc. Particularly because you have kidney involvement. Unless he is saying that your have MCTD - meaning you have symptoms of lupus AND something else. Was there something in your labs that would have the doctor thinking that?? Usually high titer specked ANA and high + RNP antibodies. And Raynauds.

UCTD wouldn't make sense with kidney involvement.
Sky

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 #6 
Taffy, thanks for the info. Sorry you had such a difficult time with the rheumatologist you saw previous. And feeling hopeful. What a letdown. I thought I would get a clearer picture with going back to UofM hospital last week. I always tell someone who is seeing a new doctor to have someone go with you and take notes. Trying to be so independent and not wanting to bother anyone; I went by myself and took no notes. I had all my records with me and they have access with the epic system to get my records from the hospital I go. I always feel uneasy when going to doctors. So long story short:: I was dx in 1980 with kidney biopsy because I had proteinuria for a few years. Biopsy dx was Fanconi's syndrome with familial glycosuria with possible hereditary nephropathy and or possibly a acquired abnormality. May represent a lupus membranous nephropathy.
Followed a rheumatologist and put on plaquenil.
1985 kidney biopsy was, glomeruli nephritis consistent with lupus nephritis.
Been followed by a rheumatologist off and on and see the same nephrologist since first being dx.
The story goes but at this point your right about why this rheumy did not think it to be lupus and dx with UCTD.
Waiting for him to sign off on the dictation then they will mail to me. Then I schedule an appointment to see my nephrologist and definitely have someone go with me.
I have joint pain, fatigue, feeling of being unwell for so long. I've given up many times and just did not see a rheumy for years.
Thanks again for your input and knowledge.
And how crazy is it that the rheumy said to you "well your not having those symptoms now". Definitely an unqualified doctor......

upstater

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 #7 
The best article on UCTD I have read is from HSS in NYC.

From that article:

Problems with the kidneys, liver, lungs, or brain are almost unheard of in UCTD.

The overwhelming majority of people with UCTD do not develop major organ damage or life-threatening disease. The hallmark of UCTD is its mild course and low likelihood of progression to a more serious state.

I really don't think UCTD makes sense with kidney issues....especially from a biopsy.

Sky

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 #8 
Upstater, what/who is HSS in NYC. I'm interested in reading the article. I have a standard order for labs from my rheumatologist and nephrologist. The rheumy I saw last week also gave me labs to have done. I'll compare them to the others so I don't have duplicate tests. I know it sounds weird that I am investigating or maybe confused with this new rheumy. I went to UofM last week because I thought they still had a lupus clinic. I was there in 2006. You see a rheumy and specialty doctors related to your conditions and go in another room and come up with dx. First visit rheumy dictated was::Currently I did not exhibit evidence of active SLE. And although one of the forms of lupus nephritis is not an exclusive nephropathy of SLE. Because I did not have my biopsies from 1980 and 1985; I scheduled an appointment to go back. . After reviewing the biopsies, she dictated: In retrospect after reviewing these tests the dx of SLE becomes more clear. I was surprised when I went there last week that they no longer have a lupus clinic. It's set up now for clinical trials. At this time it's not worth investigating until my labs are done and have my appointments with my doctors. I know it's tough to get a definitive answer sometimes.
And it probably sounds weird that having autoimmune disease for all these years; I'm finally investigating this. I just plugged along all these years working, having a family etc.
but also having fatigue, joint pain and all that goes with it. Just figured ok I have Lupus and it's a day at a time good or bad
Thanks again for responding.
Sorry to go on and on.
upstater

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 #9 
HSS is the "Hospital for Special Surgery" and they have an excellent rheumatology dept - they are #2 for rheumatology and #1 for orthopedics in the U.S. The full article is here: https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

Which U of M did you go to?


Sky

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 #10 
Thanks so much of sending the info. I live in Michigan. The hospital is University of Michigan in Ann Arbor. It's only 1 1/2 hours away from me
upstater

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 #11 
No problem! Hope you get things figured out!
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