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Just wanted some input. I was diagnosed last July with Lupus. My rheumy started me on Plaquenil and Mobic. There had been some question with Wegener's disease also. I was sent to a nephrologist due to having blood in my urine. He concluded that I have vasculitis (possibly Wegener's) and started me on Bactrim every other day (I had issues with pneumonia in the past). My condition has greatly improved.

I now had to switch rhuematolgists due to insurance. I brought all my medical records (like a novel). After reviewing and examining me, he's not so sure it is Lupus but called it Connective Tissue Disease. His main reason was because I do not always test positive for ANA. I do, however, always test positive for P-Anca which is associated with vasculitis (I am told). He is keeping me on all my meds, for now. He also said that if I had Wegener's, I would progressively get worse. My nephrologist disagrees.

I was feeling quite good when I went to see this new doctor. He told me that based on my records, and my current state of health, he's not so sure that there is anything wrong. I spoke to my GP, who was amazed. My GP has seen me very ill the past 3 years.

Is it true that you can't have Lupus if you don't always test positive for ANA?

Feel like I'm back to square one! :mad:

Thanks!
Michelle
 

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Hello Michelle,

NO! that is absolutely not true. If your treatment is working it is very possible that your ANA no longer comes back positive. That is one of the reasons why many docs don't even test it after diagnosis. On those grounds I wouldn't have a diagnosis either as I have never had positive ANA. Mixed connective tissue disease would be treated in much the same way as lupus but basically mens that you have more than just lupus going on.

quote:
Mixed Connective Tissue Disaese, which was first described in 1972, is "classically" considered as an "overlap," or mix, of three specific connective tissue diseases; systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern of illness (that is, with MCTD) have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of the three component illnesses, most commonly the scleroderma features.

It is now known, however, that overlap syndromes can involve any combination of the connective tissue diseases. Therefore, for example, patients can have a combination of rheumatoid arthritis and systemic lupus erythematosus (hence, the coined name "rhupus"). Accordingly, today, true mixed connective tissue disease is diagnosed when patients demonstrate the clinical features (exam findings) of overlap illnesses. These patients also have high amounts of ANA and anti-RNP without having such other antibodies as the dsDNA antibodies of systemic lupus erythematosus and the Scl70 antibodies of scleroderma.



I'm afraid I would want to be very sure he is not thinking of taking you off medication.

You are probably feeling so good due to those meds and will only find out how much they are doing if taken off them.

Maybe getting a letter from your last rheumy stating why you were diagnosed in the first place might "convince" this one better. Otherwise I would try and change rheumies if you can, especially with him also disagreeing with the nephrologist (who I presume you're happy with). The GP, the rheumy and the nephrologist - that makes a lot of disagreement....

hope that helps a bit,
Katharine
 

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Hi Michelle!

My ANA has fluctuated dramatically during my treatment, from 1:1280 to negative and just about everything in between. At no point did my rheumy rescind a diagnosis based on a negative ANA. The ANA should not be used as an indicator of disease activity - it's merely a screening tool.

I spent just over a year with an Undifferentiated Connective Tissue Disease (UCTD) diagnosis. My rheumy felt I had enough problems/symptoms to confirm there was a connective tissue disease process going on, but not enough to tell her which one. Perhaps this is what your new rheumy is thinking.

I agree with Katherine. If he wants to take you off the meds, find another rheumy. It is a pain in the rear, but your health is too important to be run through the mill again.

I'm glad you have a supportive GP. It makes such a difference!

Good luck, and I'm crossing my fingers that your new rheumy is just being cautious.

Terri
 

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Could your current state of health be due to the Plaquenil?????
 
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