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Old 03-24-2006, 03:38 PM   #1
Join Date: Jul 2005
Posts: 58
hummingbirdhope HB User
Lupus rash

Can anyone give me good description of the lupus rash. I have rash on face neck upper back and other lupus symptoms but would really like to hear from someone who has had to deal with this disease. I have appt monday with a dermatologist, my family dr has not been able to help me with this, she did check blood work and said the Lupus test was negative. please provide you impuut. thanks

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Old 03-24-2006, 05:49 PM   #2
Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Lupus rash

hummingbirdhope, there are several main types of lupus rashes:
(1) malar = "butterfly" facial rash.
(2) subacute cutananeous, which comes in two forms, (a) psoriasiform (looks like psoriasis but isn't), and (b) annular (target-like). These tend NOT to scar or depigment.
(3) discoid, which tends to scar & depigment.

There are also some others that are less common (bullous, tumid, etc.)

There are some "sticky posts" at the top of the thread list here that could help you a lot. One has the ACR classification criteria for systemic lupus. And the one about *test results* can take you into a whole raft of articles about lupus---and the one on skin would be just what you're after here.

There is no such bloodwork that's truly a "lupus test", not really. While ANA is almost positive in systemic lupus (SLE), it's positive only 2/3 or so of the time in SCLE (subacute cutaneous LE), and only about 50% of the time in DLE (discoid lupus). A SKIN BIOPSY done by a competent dermatologist or dermatopathologist may be worth a whole lot more...

I found this out the hard way, after 8+ years of recurrent annular (target-like) rashes on my upper arms and torso. I'd seen about 5 dermies and had the rash biopsied 3 or 4 times in the suburbs---got no answers. I was also persistently anemic; and I had joint pain, low-grade fevers, migraines, GI and urinary problems, weight loss, hair loss, ETC. My health had been "odd" since early childhood, but this took the cake.

I went to a Manhattan rheumie who within one months Dx'ed me with the SCLE "subset". I scored a "4" on the diagnostic criteria, but not the worst ones---meaning no involvement of major organs. I finally turned positive for the *anti-Ro* antibody, but my ANA remained negative, and I'm negative also for antiphospholipid. I take Plaquenil and avoid sun exposure.

Do your rashes keep recurring? What do they look like? Do you see any correlation with the sun? Do they itch? Scar? Depigment? Do you feel lousy as they are coming on? Hope you post again! Sincerely, Vee

Old 03-25-2006, 09:33 AM   #3
Join Date: Feb 2006
Location: FL
Posts: 140
Betty325062000 HB User
Re: Lupus rash

I want to add to your question and I am sorry I cannot add to the answer. I have the butterfly to the extent that I have been asked by those who know lupus if I have lupus.

I too want to know what the rash is like. Mine is not actually a rash in the sense I normally use it (allergy type) but the area is read and seems to be the skin, or just underneath the skin. It comes and goes but almost always I have a red nose.
BVan (Betty)

Old 03-25-2006, 01:54 PM   #4
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Re: Lupus rash

Hi, Betty. Has a dermie ever seen your rash? Have you read anything about malar rashes (other terms are "butterfly" and "ACLE" )?

Or, have you ever read anything about ROSACEA, which is a non-lupus skin condition? I *think* the two can look somewhat alike.

FYI, there are several excellent hardcovers in most libraries & bookstores on lupus, which also have skin info. One is by a Dr. Wallace, and there are several by a Dr. Lahita.

Also FYI, the "Resources" button above can take you to MedLine Plus, then to Health Conditions, then to Rheumatology, then to lupus. There's more skin info there, too.

Bye for now, Vee

Old 03-25-2006, 02:38 PM   #5
Join Date: Feb 2006
Location: FL
Posts: 140
Betty325062000 HB User
Unhappy Re: Lupus rash

Thanks Vee,

I will check your references as soon as I have time. Yes, I have done, read lots of stuff on all that but have never found an answer as to just how the rash looks. I have found pictures but I can't tell from them just how it is.

I have a rheumatologist that I think I will replace with a vacancy. She is worse than worthless. I have several autoimmune indications in my lab work in addition to how they effect me. I have diabetes from an autoimmune. A pulmonary specialist did labs that indicated SLE or lupus. So he referred me to the rheumatologist. The lab report said I should have some more followup on the blood that they have. All she would have had to do was tell the lab to do them. Instead she said that she doesn't know anything about those test and ordered her own, antinuclear antibody. It came back positive. The other labs were much more definitive. She said that I don't have lupus and made an apt. for 3 months. Then when I went to my primary care doctor he gave me a copy, I always get cop pies, of what she had sent him. In essence it said that, yea my sed rate is way up but it has been like that for several years, so that isn't a problem. Then the icing, She may have some discoloring on her feet but bottom line is that there is nothing wrong with her. Fortunately the GP doesn't buy that. He wanted to refer me right away to another doctor. Next week I see the pulmonary doctor again and I want to see what he says about it. I see no reason whatsoever to go back to that rheumatologist.

I have neuropathy in my feet but in addition to that they are frequently purple with parts being milk white. They were showing all that the day I was in her office. My hands are worse than my feet and I believe that is Raynauds. At times normal activity is almost impossible. Most of the time the oxygen finger clip that checks the oxygen the machine "has something wrong with it." On one occasion recently they must have tried 4 different machines and they all "had something wrong". I had a minor surgery that required light anesthesia and the oxygen warning was such a problem they turned it off when they realized I was hearing it. The anesthesiologist told me that I had Raunauds and should have it looked in too. He was the one that was trying to watch my oxygen level.

Sorry to make this so long and I bet you can see my level of frustration. Every tidbit of information is helpful.
BVan (Betty)

Old 03-25-2006, 03:19 PM   #6
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Re: Lupus rash

Hi, again, Betty. I went through multiple dermies (maybe 4-5) & several local rheumies, too. I hope *you* try another rheumie.

My mom had very purple feet, too, and blue/white Raynaud's coloring on her hands, just from getting things quickly from the freezer. She was on Coumadin for years, had some mini-strokes, etc. I now suspect she had antiphospholipid syndrome [see the sticky post on it], but she was never Dx'ed as such, to my knowledge.

I have lots of tiny capillary damage on my ankles = cutaneous vasculitis.

I really think (although I'm just a patient like everyone here) that looking for another rheumie makes sense. The one I see is affiliated with a Manhattan teaching hospital---and he took all of a minute (that famous "New York minute"? ) to size me up. Accurately, as further tests proved.

The first rheumie I saw had a bad rug (hairpiece) and a better manicure than I had. Talked longingly about the conference he'd just attended in Hawaii & how great the golf course was. Told me to get a skin biopsy (I had big circles all over my arms & back)---despite the fact that I'd handed him the three most recent. My hubby & I thought he was a HUGE bad joke.

I hope this gives you some extra hope (a lot of us here have had useless & offputting appts.) & adds to your determination to try another rheumie. Hang in there! Bye again, for now, anyway. Vee

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