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Old 04-05-2006, 12:15 PM   #1
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Question connective tissue disorder

My skin biopsy showed connective tissue disorder, could not says if lupus or not, does anyone have any info on this they can share with me.

 
Old 04-06-2006, 10:18 AM   #2
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Re: connective tissue disorder

My rhuemy keeps calling my problems connective tissue disease because he can't get to the final lupus diagnosis through blood work. I think it is interesting that your skin biopsy showed that, I thought he just used CTD as a catchall because he couldn't find a specific lupus diagnosis but couldn't rule it out cause I have the joint pain etc. Wish I could be of more help to you. While looking up CTD on the net lupus is listed as one of the diseases under the general heading of CTD.

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Old 04-06-2006, 11:29 AM   #3
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Re: connective tissue disorder

Thanks for the info, I am waiting on blood test results but my last blood test taken last summer showed negative. How are they treating you. I have fibro but would like to know if they can treat the skin flare ups and other problems./ thanks again

 
Old 04-07-2006, 03:28 PM   #4
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Re: connective tissue disorder

You might have the subset of lupus- can't remember exactly, but it's the skin form. Ask VeeJ...
pambyboo

 
Old 05-06-2006, 08:47 AM   #5
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Re: connective tissue disorder

Hello Hummingbirdhope,

I'm sorry to be so late with this reply but I'm afraid I have been off the boards for a while. I have a thing called Scarring Discoid Lupus with Associated Mixed Connective Tissue Disease. Won't tell you how many years it took to find a Dr. who looked for something unusual.

I have rough skin on my arms, legs, chest, shoulders, mostly where the sun hits. In my case the connective tissue is breaking down and leaving surface scarrs. Sometimes I will get a cut or bruise that doesn't heal properly or sometimes a couple of sores erupt out of the blue. This has been going on for almost 30 years. For the most part they just look like strange freckles until you touch the skin. My arms are the worst.

The conncetive tissue in my joints is breaking down as well but not to the extent my skin is. There is also some intersticial tissue damage in the kidneys, heart, and lungs. Not a whole lot though.

This subset of of Lupus means that the connective tissue can no longer reproduce itself in normal fashion, it is diseased, hence slow healing and scars. Hope this helps.

May God Bless Us All
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Old 05-06-2006, 06:34 PM   #6
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Re: connective tissue disorder

Hummingbird, There's a resource in the "sticky post" ( = permanent post") at the top of the thread list, the thread called "Answers to tests results questions". Navigate around there to find info about Lupus & Skin.

Lupus skin rashes can "cross subsets". One rash predominates in a lupus type, but other rashes can spring up, too. For example, someone with SLE (systemic lupus) has higher odds of having a malar rash, but could ALSO get discoid rashes, or SCLE rashes, or etc. Likewise with someone with the SCLE subset of lupus: she is most likely to have an SCLE annular or psoriasiform rash, but is also "eligible" for discoid and malar.

So, because of this potential for rashes to sometimes "cross subsets", a lupus rash *alone* doesn't define what type of lupus one has. A rash, once proven to be a LUPUS rash, says that the person has some kind of lupus, but not WHICH kind of lupus.

WHICH KIND OF LUPUS ONE HAS: Someone is said to have SYSTEMIC lupus when she meets "4" or more of the "4 of 11" criteria for SLE. (There's a "sticky post" on this, too.) The criteria don't have to exist simultaneously: they should be counted over one's LIFETIME, making very thorough medical history very important.

IF LESS THAN 4 criteria: A person may stop at one or two; a good example of this would be someone with DLE (discoid LE). People with the SCLE subset (subactute cutaneous LE) often have "4" or more, but typically not the worst possible ones (kidney & CNS are thought to be less likely).

So the REAL TRICK is for a doctor to determine if someone with less than "4" has only DLE or maybe SCLE---or whether that person is on the way to developing systemic lupus (SLE). Like Glojer says, sometimes a dr. will consider this fuzzy area to be generic "connective tissue disease" until more things either crop up, or DON'T crop up.

There are subgroups in CTD, too, for example, UCTD (undifferentiated CTD) and MCTD (mixed CTD). Each has a set of definitions, too.

Plus other *non-lupus* autoimmunes can have skin issues, e.g., dermatomyositis.

BACK TO WHAT YOUR BIOPSY MEANS: Good question! Do you know what kind of test(s) were done? Was it a "lupus band test", of both sun-exposed and non-sun-exposed skin? Or just one punch of a rashy area, subjected to microscopic exam, then maybe immunofluorescent stain tests as well?

WHAT DOES YOUR RASH LOOK LIKE? Did you even have a rash? (Just curious.)

OTHER AUTHORS: There are several authors with good lupus hardcovers, available in a lot of libraries & bookstores. Both include skin info. One author is Dr. Daniel Wallace. The other is Dr. Robert Lahita.

Sorry I can't answer your question, not really (plus I'm just a patient, too, like all of us here). FYI, I had years of what was *finally* Dx'ed as the annular form of SCLE rash, on upper arms & torso. I never had a malar rash. I was ANA-negative, anemic, elevated ESR; plus I had fevers, fatigue, weight loss, hair breakage, migraines, GI & urinary problems, neuro-like tingling, photosensitivity, etc. My local drs. & specialists would NOT make ANY call, would not treat me, and never even told me that a CTD was suspected.

When my weight went to about 102 (at 5'8"), I blew sky-high & took myself to a teaching hospital rheumie. Along with the dermatopathologist he sent me to for a final biopsy, he Dx'ed me with the SCLE "subset". I scored a "4" in the "4 of 11", and I finally tested positive for anti-Ro. I've been on Plaquenil ever since, for 6 years. I must avoid sun like the plague

I hope there's something useful to you in this too-long post! It's so hard to condense. I hope you post more soon. Meanwhile, take good care. Sincerely, Vee

 
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