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Weird question
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colesmom63 posted:
Hi all:
I am new to this board. I have a strange question. I was dx'd with Lupus back in 2009. I had no insurance after being dx'd. About 1 yr ago I went to a new Rheummy who did all the nec bloodwork to confirm dx. All my bloodwork came out negative, but I have all the symptoms. He treated me anyway and put me on Plaquenil, but I was taken off it because of side effects. Fast forward to present my Rheummy questioned my dx of Lupus. He sent me to a dermatologist (for another reason) and asked me to ask her if the rash (butterfly) I had was connected to Lupus. Long story short, she said the only way to get a firm dx since my bloodwork always comes out negative was to do a skin biopsy from the back (buttocks area). She did the biopsy and it came out positive for Lupus. My question is this...has anyone ever heard of this before (biopsy for dx)?
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lupycakes responded:
Hi,

Sorry you are going through the "yes it's lupus...no it's not" situation ( been there, done that myself).

To answer your question, yes, biopsy of skin or organ (I.e. kidney) is a common way to make a dx of lupus. In fact, some times it's the only way to know for sure.

Hope that helps!

Lisa
 
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SafariMom responded:
Thanks so much for asking this question, this is very interesting. Most information on the internet keeps saying that you should go with the ANA test, although people that actually have Lupus say that it isn't always positive.

I am going to be tested for Lupus in a few weeks, and I found this information very helpful. Thanks !

Did you have a rash in the area that she took the biopsy?

Bonnie
 
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anowlin responded:
I was diagnosed years ago with Sjogren's and then the diagnosis switched to Lupus with secondary Sjogren's about 10 years ago. About 2 months ago, my rheumie said he saw no signs of lupus in my bloodwork and the disease was showing more signs of Sjogren's with secondary Lupus.

He explained it this way in that I have a mixed connective tissue disease and as such, they can 'morph' from on diagnosis to another and it is NOT abnormal. I have been on plaquenil for a few years ago.

As far as a biopsy for lupus, I had one for Sjogren's years ago but I've not heard of one for lupus. That doesn't mean there isn't one; just means I've not heard of it. Annie


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