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Old 07-08-2009, 10:04 AM   #1
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Possible SLE Diagnosis?

Hey all. I'm new to the forum but I have a few questions with regards to SLE/Lupus. First, here is my history. Back in December/2006 I was diagnosed with Sero-Positive RA. At that time I was started on MTX and Plaquenil and I've been seeing my Rheumatologist every (3) months ever since. A little over a year ago I began to develop what, based on my own research appears to be a "malar" rash on my face. This rash would come and go, get worse after being out in the sun or overheated and will be hot to the touch and sting a little when it comes on. I brought issue up with my Rheumy a year ago and he stated that it was probably due to light sensitivity as a side effect of the MTX and Plaquenil. I was advised to cover up in the sun and use sunscreen whenever possible. At the time I accepted his explanation. However over the next several months I began to notice that I could be in the house for several days without going outside and having the blinds closed and that the rash would still come on. My wife also made note of the fact that the rash almost always comes on or gets worse during an RA flare. I brought this issue up with my Rheumy again yesterday and he stated that since the issue was still a concern to me and also due to the fact that I've had a consistantly low platelet count for the past (6) months that he would run an "ANA" test to see if SLE Lupus was the culprit. He stated that the ANA test alone could not confirm the diagnosis of SLE and that if the test came back positive I would have to have more tests.

According to the Lupus Foundation website the induction of cytotoxic and antimalarial drugs can bring a positive ANA down into the normal range. Due to my Rheumatoid Arthritis I'm already taking both MTX and Plaquenil and I've been taking these drugs for over 2 1/2 years. That said, I think there is a very good possibility that I may not show a positive ANA result due to me taking these meds.

If that is what transpires and I get a negative ANA result, how should I proceed since the ANA result "could" be skewed due to my current med regimine? Are there any other tests that can help diagnose SLE that would not be affected by MTX or Plaquenil?

Obviously, I can't stop using the MTX and Plaquenil or my RA will flare up with a vengance. My wife and I see a definate connection between my flare ups and the Malar rash that I've presented with for over a year. The rash just doesn't seem normal to me and I've never heard of a Malar rash due to RA.

Any info would be greatly appreciated!

Ta2d

 
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Old 07-08-2009, 03:20 PM   #2
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Re: Possible SLE Diagnosis?

Hi, ta2d, and welcome! Obviously I'm merely a patient, so please take everything that follows in that light.

Like you, I've never heard of a malar rash due to RA. I have heard, though, of RF sometimes being positive in lupus-only patients. Also, I've read about a *crossover* called "rhupus", featuring aspects of both RA & SLE.

The only sure way I know of to determine whether a rash is a lupus rash is via skin biopsy coupled with immunofluorescent stain tests. (The stain tests light up in lines that are characteristic to lupus, which is why they're considered so valuable a tool.) I had these tests done by a dermatopathologist, but I'd guess a dermatologist could also call for them to be done by an outside lab. (But I assume a positive on the skin tests would prove lupus without disproving RA...)

Dr. Wallace writes about distinguishing RA from SLE with X-rays when lab tests come out suggesting either/or: "mouse bites" can show up on X-rays in RA. But whether RA *always* produces mouse bites, I don't know, especially early on in the disease or where a patient has taken meds to forestall same. (And I assume mouse bites would suggest RA without disproving lupus.)

At the time of initial Dx, did your rheumie find any specific autoantibodies other than RF, like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc.? Dr. Wallace lists 16 such things seen in lupus, with varying degrees of specificity. Anti-ds-DNA & anti-Sm are the only two on the long list considered specific to SLE; the others, less so, and to varying degrees.) Your rheumie could call for these more *specific* autoantibody tests at the same time he orders a new ANA. Unfortunately, I think some of these substances can wax & wane with flares, and/or due to meds as well...

While csome treatment for RA and SLE can overlap---the meds you've taken may be utterly appropriate for both---I can sure see why you'd want to know which you have, or whether you have aspects of both! Minimally, there'd be varying problems to be on the lookout for, I think.

Dr. Daniel Wallace covers all the above---and much more---in his excellent hardcover, which is in most libraries & larger bookstores. I think the 3rd edition is the most current. The index at the end can help you zone in quickly. I hope you can get clarity soon. Let us know how you're doing, OK? Sending warm wishes to you, Vee

P.S. It's actually possible to have SLE without a positive ANA. But so-called "Ro-lupus" requires the "anti-Ro" autoantibody & also meeting the usual # of ACR diagnostic criteria. It's very rare, which I learned the hard way, by living it. (A prolonged, confusing MESS!) People with Ro-lupus are actually "eligible" for malar rashes, but far more often they have only SCLE psoriasiform or SCLE annular as their rash type.

 
Old 07-09-2009, 05:14 AM   #3
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Re: Possible SLE Diagnosis?

Ta2d, this is a P.S. I forgot to point out the "sticky posts" (permanent info posts) at the top of the thread list, particularly the one with the ACR criteria for diagnosing systemic lupus. You typically must meet at least 4 of the 11 to support a Dx of SLE. The criteria may be met over time, as opposed to all at once. Think of checking them off in indelible ink, as my rheumie explained it to me.

FINE POINTS: (1) There are apparently people who meet less than 4 but are Dx'ed with SLE anyway, because they meet the criteria considered highly specific. An example might be someone with malar rash, and high-positives on both ANA and either anti-ds-DNA or anti-Sm. (2) There are lesser forms of lupus, sometimes called "subsets", for which you may meet fewer than 4. One example is DLE, discoid lupus, which affects mainly skin but may feature pain & fatigue as well. In it, people tend to meet fewer than 4 & remain sero-negative. In SCLE subset, some people meet fewer than 4, but most meet more than 4; but the criteria met tend to be the milder ones from the list, with the very worst (renal & CNS involvement) believed to be rare.

And if these SLE diagnostic criteria seem complex, I personally find the formal criteria for diagnosing RA even worse! They're even more layered, and some have minimum time requirements (e.g., must meet this one for 6 consecutive months before it's checked off, etc.)

Also, I looked for a rough % of positive RF in *lupus* patients. Dr. Wallace's lupus hardcover charts 16 bloodwork findings common in lupus. RF seemingly occurs in about 30% of those with SLE, per Dr. Wallace, that is.

For what this is worth... Clear as mud, huh? I hope reading books & comments from patients can help as you review things with your doctor(s), but, obviously, only your doctor(s) can provide professional explanations. (Meaning, I'm only a DUMB PATIENT.) Good luck! I hope you post updates as your time permits. Vee

Last edited by VeeJ; 07-09-2009 at 05:57 AM. Reason: spelling & modification

 
Old 07-09-2009, 06:17 AM   #4
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Re: Possible SLE Diagnosis?

Quote:
Originally Posted by VeeJ View Post
Ta2d, this is a P.S. I forgot to point out the "sticky posts" (permanent info posts) at the top of the thread list, particularly the one with the ACR criteria for diagnosing systemic lupus. You typically must meet at least 4 of the 11 to support a Dx of SLE. The criteria may be met over time, as opposed to all at once. Think of checking them off in indelible ink, as my rheumie explained it to me.

FINE POINTS: (1) There are apparently people who meet less than 4 but are Dx'ed with SLE anyway, because they meet the criteria considered highly specific. An example might be someone with malar rash, and high-positives on both ANA and either anti-ds-DNA or anti-Sm. (2) There are lesser forms of lupus, sometimes called "subsets", for which you may meet fewer than 4. One example is DLE, discoid lupus, which affects mainly skin but may feature pain & fatigue as well. In it, people tend to meet fewer than 4 & remain sero-negative. In SCLE subset, some people meet fewer than 4, but most meet more than 4; but the criteria met tend to be the milder ones from the list, with the very worst (renal & CNS involvement) believed to be rare.

And if these SLE diagnostic criteria seem complex, I personally find the formal criteria for diagnosing RA even worse! They're even more layered, and some have minimum time requirements (e.g., must meet this one for 6 consecutive months before it's checked off, etc.)

Also, I looked for a rough % of positive RF in *lupus* patients. Dr. Wallace's lupus hardcover charts 16 bloodwork findings common in lupus. RF seemingly occurs in about 30% of those with SLE, per Dr. Wallace, that is.

For what this is worth... Clear as mud, huh? I hope reading books & comments from patients can help as you review things with your doctor(s), but, obviously, only your doctor(s) can provide professional explanations. (Meaning, I'm only a DUMB PATIENT.) Good luck! I hope you post updates as your time permits. Vee
Vee,

Thanks for all of your help and info. It has been a great help! I'll definately keep you posted as to what transpires. Since both RA and SLE are treated almost identically I suppose it's not imparative that I get a definative answer on whether or not I have SLE. However, I have to admit that the Malar rash does indeed definately bother me as it just doesn't look normal and again resembles a red racoon mask. I'd simply like to know exactly what I'm dealing with so I can have a full understanding of potential issues to look for throughout my treatment.

As far as meeting criteria to meet a diagnosis, I don't have the results back of my ANA test yet. However I can tell you that I already have 4 out of 11 which is a Malar Rash, Thrombocytopenia on two or more occassions, joint pain and inflammation and repeated mouth sores (even before I began the MTX). We'll see how the ANA test pans out.

I'll keep you posted.

Ta2d

 
Old 07-09-2009, 07:41 AM   #5
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Re: Possible SLE Diagnosis?

Wow, your add'l info is interesting! But honestly? If I were in your shoes, I'd want to know which it is, or whether it's both.

I know little about RA, only what a college buddy has shared & asked me to read along with her. But if the "watch list" differs between the SLE & RA, meaning the things doctors are most concerned about a patient developing & thus monitor very regularly? Well, that alone would make me want my drs. to revisit everything. Also, I'm not sure how much of a role SUN can play in RA, but it certainly affects many (but not all) lupus patients. With more good wishes, from Vee

 
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