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Old 11-11-2008, 08:45 AM   #1
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waldo824 HB User
what's next?

First my ANA was 1:320 homogeneous, +DSDNA, polyarthralgias, sun sensitivity, fatigue and raynauds. Now the rheumatologist says the lupus anticoagulant was positive - he did start me on prednisone 40 mg for two weeks, 30mg x2w then 20mg - he repeated blood work again today - next appointment is in 5 weeks. Today's dx was unexpalined autoimmune of some sort! What do you think? Thanks.

 
Old 11-12-2008, 02:15 AM   #2
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Re: what's next?

Waldo, it's my understanding---from reading---that anti-ds-DNA is seen *only* in lupus. So once seen, it should raise a big red flag. But I suspect some doctors want to see multiple positives, especially if the level is low and a sfficient number of OTHER criteria haven't yet been met... And I don't know how often a false positive result on anti-ds-DNA can occur. Plus I *think* it's an autoantibody whose levels rise & fall with flares. Has your rheumie retested?

As for ANA, I suspect 1:320 is not considered "high". But it also may rise & fall with flare activity.

The "sticky post" at the top of the thread list lists diagnostic criteria for SLE. Typically you must meet at least 4 of the 11 at some time (meaning not necessarily all at once) to sustain a Dx of SLE. (There are lesser kinds & variants for which you may meet fewer than 4.)

There's also a "sticky" on antiphospholipid syndrome (APS). It can be seen in conjunction with lupus or "standalone".

I've certainly heard of doctors prescribing prednisone before they've arrived at a formal Dx, to see if it helps. If it does, that also adds weight to a Dx of certain autoimmunes, but lupus is probably NOT the only possibility where this is done. For example, my sister-in-law took prednisone when her rheumie suspected dermatomyositis.

After years of looking for answers & help, I was Dx'ed with a rare lupus variant (Ro-lupus). I had enormous trouble getting answers, so I borrowed from my local library lupus hardcovers written for patients. You could look for Dr. Daniel Wallace and/or Dr. Robert Lahita.

I hope this helps some. Hang in there! Wishing you better days ahead, and soon. Sincerely, Vee

 
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Old 11-12-2008, 06:51 PM   #3
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Re: what's next?

It may be that your doctor is doing more tests (maybe repeating some, maybe doing some new ones too) so he can have more definitive answers for you at your next appointment. I was diagnosed with lupus 15 years ago and had ANA of 1:2560, low C3, C4 complements, + double stranded DNA, and both lupus anticoagulant and antiphospholipid antibodies. Like Vee mentioned, I was told that ds-DNA was pretty specific for lupus but the rheumatologist didn't specifically tell me that it can't be present in other conditions either so I don't know. Fortunately or unfortunately, had lung and heart involvement, swollen joints, and a very prominent malar rash so my diagnosis was pretty easy. My complement, ANA and ds-DNA do fluctuate...they increase when I have a flare and can sometimes be very, very low when I'm doing great so maybe he's repeating the blood work to see how you're doing. I'm not sure if you've been on Prednisone before or if he explained some of the side effects to you but when I first took it, I was in for a big surprise! My appetite was ravenous and I could not sleep at all!! So...if that happens, it's quite common. It can give people mood swings too. I'm on a blood thinner for the lupus anticoagulant and APL antibodies because I've had blood clots. I'm sure you'll get more information at your next appointment but if you start feeling worse, I wouldn't hesitate to call the doctor earlier. If it's any consolation to you, I've had a few really rough years but for the most part, I'm able to live quite a normal life with lupus. You would never guess I had it (unless I happen to have the rash...that's a big giveaway!) just by looking at me. Good luck!
Quote:
Originally Posted by waldo824 View Post
First my ANA was 1:320 homogeneous, +DSDNA, polyarthralgias, sun sensitivity, fatigue and raynauds. Now the rheumatologist says the lupus anticoagulant was positive - he did start me on prednisone 40 mg for two weeks, 30mg x2w then 20mg - he repeated blood work again today - next appointment is in 5 weeks. Today's dx was unexpalined autoimmune of some sort! What do you think? Thanks.

 
Old 11-13-2008, 04:30 PM   #4
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JO ANNE HB User
Re: what's next?

Hi!!
I certainly think that your rheumy is on the right track in trying to find what's going on with you. All you have to do is try to be patient.
I have lupus. My ANA , DSDNA, APS,C3 C4 all were postive. I had the red malar rash, I also suffered 2 small TIA's, before my diagnosis back in 2001.
I was put on high doses of Prednisone, and initially Plaquinnel. I was on Plaquinnel for six months, doc determined that it was helping at all.. Then came the Terrible Imuran.... I did fine for 6 months, then all of a sudden in affected my liver and all the liver enzymes were about 850. That alone can kill the liver. I was so darn sick. So over a period of weeks, my doc decided that he would try Cellept. This medicine is used for Lupus Nephritis, and also as an anti rejection medicine for heart transplants.
We were at an impase. Over time my dose was increased and I was at the max of 3,000mg a day.
Now, for some odd reason, all my tests have come back negative. Not even the AP, DSDNA,C3 or C4 all negative.
Doc said I was in remission.
So, let yet your doctor help you. Read Dr.Daniel Wallace's Lupus Books. You can find them in your local library or buy them at a local big book store. That is where I bought all of my books. When I was first diagnosed I read every thing I could about Lupus.
Be informed , and be sure that the doctor knows what is going on with your body.
Sincerely, Jo Anne

 
Old 11-13-2008, 04:30 PM   #5
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JO ANNE HB User
Re: what's next?

Hi!!
I certainly think that your rheumy is on the right track in trying to find what's going on with you. All you have to do is try to be patient.
I have lupus. My ANA , DSDNA, APS,C3 C4 all were postive. I had the red malar rash, I also suffered 2 small TIA's, before my diagnosis back in 2001.
I was put on high doses of Prednisone, and initially Plaquinnel. I was on Plaquinnel for six months, doc determined that it was helping at all.. Then came the Terrible Imuran.... I did fine for 6 months, then all of a sudden in affected my liver and all the liver enzymes were about 850. That alone can kill the liver. I was so darn sick. So over a period of weeks, my doc decided that he would try Cellept. This medicine is used for Lupus Nephritis, and also as an anti rejection medicine for heart transplants.
We were at an impase. Over time my dose was increased and I was at the max of 3,000mg a day.
Now, for some odd reason, all my tests have come back negative. Not even the AP, DSDNA,C3 or C4 all negative.
Doc said I was in remission.
So, let yet your doctor help you. Read Dr.Daniel Wallace's Lupus Books. You can find them in your local library or buy them at a local big book store. That is where I bought all of my books. When I was first diagnosed I read every thing I could about Lupus.
Be informed , and be sure that the doctor knows what is going on with your body.
Sincerely, Jo Anne

 
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