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09/01/2008 12:12 PM

garden variety lupus vs organ lupus

temeraire
 
Posts: 12
New Member

My rheumy did a bunch of tests and said that I just have "garden variety Lupus", and that my DNA does not show any organ involvement. That's good news. Does that mean that I will just have general symptoms and that it won't affect any of my organs . . forever? Or does it mean right now it's not attacking anything, but later on it could start attacking an organ? If so, are the tests repeated every so often to see if it is affecting organs? Thanks for the help!

Clueless!Wassat

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09/02/2008 05:52 AM
fibroforever
fibroforever  
Posts: 4152
VIP Member

I've not heard of garden variety Lupus. Interesting. What did the doctor tell you about it?

I have a Positive Speckled ANA with a Titer of 1:80. And my DNA was negative.

I'm gonna have to check more into this garden variety Lupus.

Sorry, I'm of no help as to whether it won't affect your organs at all, ever. That would be truly wonderful though if it never does!


09/03/2008 10:49 PM
NoodleMom10
NoodleMom10  
Posts: 32
Member

Garden variety lupus. not a phrase I have heard before. I believe that it means that there is no internal organ involvement yet. I have SLE in which my muscles and joints are affected. I am in a huge amount of pain. I also am dealing with skin rashes, GERD, gastritis, mouth sores, brain fog, horendous exhaustion, IBS and Fibro. As of yet it has not affected my internal organs. Thank God for that the external is plenty thank you.

Do yo have muscle pain?

Kasey


09/04/2008 03:10 AM
fibroforever
fibroforever  
Posts: 4152
VIP Member

I must have the garden variety then. I have SLE (on certain days, with certain doctors anyway) but don't have it affecting any organs. Have joint pain, muscle pain, mouth sores, fog, extreme fatigue, etc. Also have Fibro.

09/04/2008 01:42 PM
temeraire
 
Posts: 12
New Member

It's not a technical term - I think she just made it up, which I guess is better than spouting a bunch of medicalese that I wouldn't understand either. I guess it just means SLE then. I've got the muscle and joint pain, the rashes, Reynaud's, fatigue, brain fog, mouth sores, high sed rate, positive ANA, and this weird neurological stuff that sounds like peripheral neuropathy. She did the DNA test, which showed Lupus, but the DNA for organ involvement was negative. I just don't know if that means I never will or I just don't right now. All I can say is this garden is not harvesting anything good!

09/15/2008 12:45 AM
crimsonshedemon
crimsonshedemon  
Posts: 148
Member

We can have systemic lupus with or without organ involvement.

Just because we don't have organ involvment today doesn't mean it can't happen.

Looks like there's some misunderstanding about the anti-dna antibody test.

The anti-dna test does NOT test for all organ involvment. Organ involvement is shown by testing the liver, the kidneys, etc. When those values are "off", that can mean organ invovlement.

While high levels of the anti-dna antibodies may indicate lupus nephritis, it's not a concrete answer.

There is not 1 test that says "Yes, you have organ invovlement".

Lupus is not that easy. Just as disease activity is not determined by 1 test. Many blood tests, physical exam, history, etc are needed to put the pieces of this crazy lupus puzzle together.

Antibodies to DNA, either single or double-stranded, are found primarily in systemic lupus erythematosus, and are important, but not necessary or sufficient for diagnosing that condition. Such antibodies are present in 80% to 90% of SLE cases. They are also present in smaller fractions of patients with other rheumatic disorders, and in chronic active hepatitis, infectious mononucleosis, and biliary cirrhosis.

In the past it was considered unnecessary to test for anti-DNA in patients with a negative test for antinuclear antibodies. A group of "ANA negative lupus" patients has been described with anti-ssDNA and anti-SS- A/Ro and anti-SS-B/La. However, HEp-2 substrate is much more sensitive than frozen section substrates, and it is uncommon for anti-SS-A/Ro to be negative with these newer substrates.

This standard dsDNA detects both low- and high-affinity antibodies, providing a very sensitive test for diagnostic purposes; however, it is less predictive for severe nephritis, which is associated with the presence of high-affinity antibodies.

Following levels of anti-DNA antibody may be of use in evaluating response to therapy, but should be regarded as a guide rather than a rigid dictator of treatment. Antibody levels correlate particularly well with activity of lupus nephritis.

Procainamide and hydralazine may induce anti-DNA antibodies, and antihistone antibodies.

HTH

Nicole


01/23/2009 10:29 AM
Jesmicole
Jesmicole  
Posts: 72
Member

Hi..I was told by my Rhumie that they can not predict what is going to happen with Lupus. You could go into remission for the rest of your life, stay the same or get worse! Great prognosis!!! I think you have to stay positive and live every day as it comes.... Smile

07/02/2009 04:52 AM
SomewhereInCalifornia
SomewhereInCalifornia  
Posts: 397
Member
I'm an Advocate

This is an old discussion...but I just thought that I'd put this one out there too...I was told I was Lupus-like and thought for a few years that my Autoimmune Doctor was literally saying that what I had was kind of like this or kind of like that... Then, I finally looked it up on the web and it's an actual category...who knew? It's not my main Autoimmune problem but it still caused major havoc for a long time.

07/02/2009 06:04 AM
KJC1385
KJC1385  
Posts: 1587
Senior Member

I'm not sure what category you are in because I haven't heard of that as a category but I do know that I have been told by doctors that it can take sometimes longer than 10 years for lupus to even completely show in your bloodwork. And that doesn't mean you don't officially have it before then, it just hasn't shown up in that way. I'm not sure if you have read the other posts about the criteria but that is mainly how I was diagnosed with it. My doctor never questioned it regardless of how many times my bloodwork keeps coming back negative. I have only had a postitive ANA 1 time and came up equivicol for lupus 1 time. Its just such a complex disease to diagnose that I think every doctor has a different approach to it.

07/02/2009 08:59 AM
crimsonshedemon
crimsonshedemon  
Posts: 148
Member

What's an autoimmune doctor?

Typically, lupus is treated by a rheumatologist but many type of doctors can treat lupus and other autoimmune diseases- just depends on what's affected.

Currently, I'm using a family physician as there are no decent rheumies locally.

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