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Old 12-07-2007, 08:37 PM   #1
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erfan HB User
Lupus Or Not To Lupus

Recently I have had my chronic pain issues (3 bulging discs, 2 levels of spinal stenosis and facet hypertrophy) added to by symptoms such as:
extreme fatigue
loss of appetite
joint pain
psoriasis
itching
chills (wear 3 shirts and 2 jackets in South Florida!)
weird kind of deep body ache

My PCP rxed me with psoriatic cancer, and had me do a blood test to rule out Lupus. The blood test did come back negative for ANA but on the other hand, showed elevated Sed rates and elevated C-RP and at the same time, showed mild anemia.

Went to hemotologist who repeated blood test and said I had a ton of arthritis (which I already knew) and said I had Anemia of Chronic Disease.

Today was a very bad day for me...unbelievable tiredness, high levels of back pain, body aches and then tonight, I looked in the mirror and had the Lupus mask across the bridge of my nose and under the eyes.

But isn't Lupus ruled out by the negative ANA test?

I also am having pain in the upper left thigh. Hemotologist did a lymph node check as far as I know.

So, is it Lupus?

 
Old 12-08-2007, 09:22 AM   #2
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Re: Lupus Or Not To Lupus

Hi, I may be able to help you out a bit, i am 40 now and at around 19, i was dianosed with lupus. I had no real bad symtoms, but knew something was wrong, different pain in different joint everyday etc. I continued to go the the same doctor for the next 8 years, he ran blood tests every 3 months, my ANA was not always positive, (I realized it was basically where i went to get the blood work done) when my ANA was neg. it was I had Antiphospholipid syndrome, which we always knew i had, when the ANA was positive, i had both. After no real problems (at least that i could not deal with) i gave up going to the doctor and now only put APS (also called hughes syndrome) down and possible lupus when i go to a new doctor. I think about 60 percent of people with Lupus also have APS, which can cause much of the same symtoms. I have had no major problems with the APS either, but you always have to be aware of it, because of blood clots, ask your doctor to check for this, one simple blood test, and stop taking birth control and stop smoking if you do. My sed rate has never been normal, the lupus anti. has never been negative, my ANA goes back and forth. My igg and igi levels _ APS are off the charts. I too am going through the the same neck problems you are and am close to a surgery date. The pre admission testing will show that i will bleed to death, when if fact it is the opposite? (i have been through this before) Most doctors will say without a postive ANA you cant have lupus. Ask your doctor to check for APS, very easy and can explain most of what your saying. And most likely, if you have APS you also have lupus, hopefully like me, i just live my life and say i will worry about it when something happens, which so far so good. As far as APS the only doctors who will even know what it means are your Rhemy and your OBGYN, most others will not have a clue, because if you read about it, it was only recently removed from lupus, it was always that if you had aps you have lupus. Dr. Hughes separated it about 10 years ago, which is why it also called hughes syndrome. Goood luck to you, hope i helped.

 
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Old 12-08-2007, 09:26 AM   #3
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Re: Lupus Or Not To Lupus

One more note, if the ANA is negative and the Lupus anti. is neg (you didnt mention that test) (even if it is positive, doesnt mean you have it) it cant be lupus, you have to have at least the positive Lupus anti test, that will never show up negative if you have it, but then again a positive doesnt mean you def. have lupus. Did they check that? If i was negative, you dont have lupus. Remember im not a doctor but been doing this for 20 years!

 
Old 12-08-2007, 11:46 AM   #4
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Re: Lupus Or Not To Lupus

Erfan, Hi. Another possibility for ANA being unexpectedly negative is that there are several OTHER "subsets" of lupus in which ANA more frequently remains negative than it does in classic systemic lupus (SLE).

I was eventually Dx'ed as having the SCLE subset (subacute cutaneous lpus erythematosus) of SLE. In it, ANA is positive only about 70% of the time (or so). Anti-Ro is the most common autoantibody. While there are two forms of SCLE-specific rashes, people with SCLE may ALSO have the butterfly rash associated more closely with SLE.

The two SCLE-specific rashes are as follows. (1) psoriasiform or papulasquamous. This one looks like rather like psoriasis (but isn't). (2) annular, meaning targetlike circles. (I had this one.) Both typically appear on photo-exposed skin. (Mine were on upper arms & back.) Both tend NOT to scar or depigment. SCLE patients are often extremely photosensitive. (Florida vacations were a big culprit in my rashes.)

The gold standard for a skin biopsy, if lupus is suspected, is to do the standard miscroscopic exam, and ALSO immunoflourescent stain tests. Under these, a lupus rash lights up in a very characteristic way. These tests can't say what type precisely of lupus rash it is (ACLE, SCLE, DLE, etc.), only that it is some form of a lupus rash.

About 50% of people with SCLE meet 4 or more of the ACR criteria, so they can look pretty "lupus-y", even though they may meet different criteria than someone with SLE might have. In SCLE, the full range of problems seen in SLE is possible, but it's believed that the odds of the worst ones (kidney & CNS) are less in SCLE than in SLE.

I stayed ANA-negative, and that really slowed my getting answers. I had 8+ years of rashes. Also fatigue, anemia, low-grade fevers, weight loss, hair loss, GI & urinary problems, migraines, stones, joint & shin pain, etc. I finally went to a teaching hospital rheumie, and VOILA. From there, it took less than a month to get results back & answers. And (yay!), Plaquenil.

I hope this gives you something to ponder, how lupus has forms OTHER than classic SLE, and rashes OTHER than the classic butterfly. Just give a yell if anything here catches your eye, OK? Good luck! Sincerely, Vee

 
Old 12-08-2007, 11:53 PM   #5
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erfan HB User
Re: Lupus Or Not To Lupus

Thanks for the replies. I'm not sure that I had a Lupus anti-test.

I think I will call my hemotologist on Monday and see what he says. Saturday I felt a smidgen better than how I felt Friday.

The worst thing is the fatigue and the deep aches.



Alan

Last edited by erfan; 12-08-2007 at 11:54 PM.

 
Old 12-09-2007, 05:30 AM   #6
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Re: Lupus Or Not To Lupus

Erfan, Forgot to ask about your sun exposure, since you're in south Florida. Does exposure make your rashes better or worse? In psoriasis, I think sun mostly improves your skin. In contrast, in lupus, sun often triggers &/or worsens rashes.

I spoke in a prior post about anti-Ro antibodies & how people with them can be excruciatingly photosensitive. FYI, anti-Ro is seen both in lupus & in Sjogren's syndrome; so if it's found, drs. still have to conclude if the patient has lupus, or Sjorgren's, or both.

Now back to the ANA test... I was BOWLED OVER to find that it is fairly often *negative* in the SCLE form of lupus. The teaching hospital drs. I finally saw both explained that in some people, anti-Ro seems to "mask" the ANA test. It's not known why, though. So there I was, now meeting more than 4 of the ACR criteria for SLE, but still ANA-negative. (My luck...!)

On a different subject---I think lupus anticoagulant, antiphospholipid antibody, and anticardiolipin antibody all have to do with *antiphospholipid syndrome*, a clotting disorder that's fairly common in lupus patients. They're not lupus tests, despite their confusing & overlapping names. See the "sticky post" (permanent info post) on APS at the top of the thread list.

In your shoes, I think I'd try a new dermatologist or dermatopathologist, since your skin problems are visible & can't be ignored. If you do, try to ferret out if he/she knows lupus rashes in their various forms. I concluded (sadly & with disgust) that my suburban dermies were 20+ years behind knowledge-wise. They told me such CRAP (flea bites, get rid of your dog; nerves; Lyme disease; etc.) In contast, my city drs. snapped into action in the proverbial New York minute.

Just give a yell if anything here catches your eye, OK? Best to you, from Vee

Last edited by VeeJ; 12-09-2007 at 05:31 AM. Reason: spelling

 
Old 12-12-2007, 11:48 PM   #7
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erfan HB User
Re: Lupus Or Not To Lupus

Asked my hemotologist if the blood work up showed Lupus and his response was that, well, he didn't test for EVERYTHING on the first appointment.

So, instead of waiting until January as per the original plan, I am seeing him Wednesday for further blood work ups. I'm wondering if a marrow biopsy will be put on the table. After all, anemia of chronic disease can be anything, including Lupus. But the mask on my face on Friday gave me a major clue.

Alan

 
Old 12-13-2007, 04:35 AM   #8
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Re: Lupus Or Not To Lupus

Alan, That's my understanding, too, that anemia has many causes...

IF you circle back to rheumies & dermies, in your shoes, I'd drop little comments to let them know that YOU know that there are MULTIPLE kinds of lupus rashes & skin conditions possible---IF lupus remains in the mix, that is. Pathetic as this is, *I* was the one who showed my local drs. pics & articles that *appeared* to match my chronic rashes. When I switched to a big-city rheumie & dermatopathologist, they were both quite surprised that my suburban drs. were so clueless...

...which is only my way of saying that patients have to continually assess whether their drs. are really "up" on things... which isn't so easy for patients to do (we can go down wrong tracks, unintentionally infuriate drs., etc.) Anyway, I hope you have a "Voila!" appointment really soon!

Thinking of you, Vee

 
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