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Old 10-08-2012, 11:29 AM   #1
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Lupus questions

Hi, I'm new to Lupus ,, First Biopsy & Blood work was May 14 2012, then
every three weeks . I've read all I could over the last 19 weeks.
The one thing i haven't found a reference to, is a complement C4 @ <2
I've been to six different doctors and , Just questions . Any ref. to a Less than 2 C4 & C3 is @ 80 still low , but not of as much concern.
The First real For sure Sign of the Lupus was Last March I went to the Florida
Bike Week and 8 days in the sun started a rash that kept on growing .

 
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Old 10-10-2012, 05:34 AM   #2
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Re: Lupus questions

Hi & welcome. I don't know about C2 levels (sorry), but I am curious what your skin biopsy revealed. I ask because I had two *half-baked* deep-punch biopsies; neither went anywhere, but my THIRD biopsy was sure instructive! By then, I'd taken myself to a teaching hospital rheumatologist, who referred me to a dermatopathologist who knew how to do a biopsy RIGHT where lupus is suspected.

Here's what differed from my first two biopsies. In addition to microscopic analysis, he performed *immunofluorescent stain testing*, which can reveal linear bands that are considered unique to lupus. What's lighting up is "immune junk" that's pooled between dermal & epidermal layer, and this deposition is a hallmark of lupus. I think the test is called "lupus band test", and it can be a godsend for people who aren't quite meeting the criteria & are stuck in diagnostic limbo.

Another thing I learned the hard way is that there are many more lupus-specific rashes than the two included in the ACR criteria (discoid and malar). I had one of the others, called SCLE annular form. Over eight years, I must have seen 8-9 dermatologists, not to mention gastros, urologists, neurologists, a local rheumatologist, etc. The answer was there all along, had my skin biopsies been performed more professionally, and had my local specialists been more conversant with the many faces of lupus... I hope you've made progress & that something here helps. Let us know how you're faring, OK? Sending warm wishes, Vee

 
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Old 10-10-2012, 03:05 PM   #3
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Re: Lupus questions

Hi, Vee ,, 1st , Thank ‘s for responding . I’m going to see a rheumatologist today about his concern With Complement C4 level . On the Biopsy question , Pathologic Diagnosis A. skin, right forearm punch Biopsy: Consistent with Lupus erythematosus. Then the blood work report came back “”Abnormalities in Complement levels. ANA / were weakly positive & double stranded DNA. Positive Titer 1:20 Ro/SSA was Positive, Which makes your skin condition consistent with Subacute cutaneous lupus erythematosus. At the time of going into a Dermatologist I had already found a web match , it was
Subacute Cutaneous Lupus Erythematosus (SCLE)
emedicine.medscape.com/article/1065657-overview

And I brought the paperwork with me. It appeared that I was hit with five different lupus rashes on sun exposed skin at the same time , but the biopsy was just from my arm. I was also hit on ears, v of the neck , face across the nose , shoulders, and hands . Prednisone slowly reversed all the rashes , until Plaquenil took over, every rash went away without a scar , but left dyspigmentation. The next Blood test came back , saying Consistent with Systemic lupus , But the blood work was the same as before, So 15mg of Mobic was added to the 400 mg of Plaquenil .
I have stayed out of the sun, But if it hits my face, I feel a sting instantly. They didn’t do a titer on the Ro/SSA so I won’t know if it ever gets less sensitive . As of now my blood work looks much better, except for Complement C3 & C4. The rheumatologist Wants to put me back on prednisone , but C3 & C4 were low when I was on 60 mg pred, per day. I’m confused?

 
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Old 10-11-2012, 01:18 AM   #4
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Re: Lupus questions

First off, good for you, NOT that all this is happening, but that your SCLE rash was dx'ed quickly, nailing your dx down fast. I was also positive for anti-Ro, and here are some things I was told.

1. People with either of the SCLE rashes (annular or psoriasiform) tend to be extremely photosensitive, so sun precautions are essential. (I wear hats, long-sleeves & long trousers, and sunblock; and I avoid prolonged exposure to midday sun.) I asked if the sensitivity would abate & was basically told NO, bad news for outdoor lovers.. but then one weighs the potential for organ damage, and it's a no-brainer.
2. People with lupus are indeed "eligible" for multiple rash types. I got a huge discoid (scarring) lesion on my face & needed surgical repair b/c it wouldn't heal over. BTW, discoid lesions on the scalp can cause permanent hair loss, which you do not want.
3. Hats should be of dense material & have broad brims. Outdoor provisioners often sell ones that are UV-sun-block rated. I've seen Australian brands advertised that look well-made.
4. The more widespread the rash (ex: both above & below shoulders), the more likely the patient will have add'l systemic issues.
5. Studies have been mixed in how people in the anti-Ro subset tend to fare, when compared to the other subgroups. One study showed less frequent major organ involvement (heart, lungs, kidney, brain), but another showed no appreciable difference. So I was told to assume I'd do well but to behave as though I wouldn't, i.e., take my meds, avoid sun, get flu (etc.) shots, and follow-up regularly with rheumatologist (regular blood labs & urinalysis).
6. I use a block with SPF 32+ on my face, but being a woman, I can then slather on a foundation that also has SPF. (My husband says I trowel it on in the morning & chisel it off at night. ) One's face & ears tend to grab sun, so I take special care of those. Also, watch your driving or passenger arm, the one adjacent to your car window.

I think C3 and C4 are "serum complements", which act as helpers in immune system function; and that disease processes (inflammation, autoantibodies, etc.) can deplete these essential components. In lupus, the immune system is both over-active and aberrant. Steroids SUPPRESS the immune system. Plaquenil is milder, and it only modifies but doesn't outright suppress; and, worse, it can take 4-6 months to reach its full effect. So rather than waiting, maybe your dr. wants your C3 & C4 to resolve more quickly, and believes that Prednisone is the best way to achieve that? I'd just ask him---and also if there's any other reason C3 & C4 deplete.

I hope others who know more about C3 and C4 chip in.

Glad you found us. Let us know what happens next. All my best, Vee

Last edited by VeeJ; 10-11-2012 at 01:21 AM. Reason: typos

 
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