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Old 04-25-2008, 11:52 PM   #1
Join Date: Apr 2004
Location: Baltimore, MD
Posts: 488
Blessed4Life HB User
Exclamation Facial Rash, Dark patch on nose, dry and scaly scalp

I have had reoccuring rashes in various places for about 5 year. The rash on my face had mostly appeared in the spring and summer. It never really looked like the lupus rash pictures so I didn't think too much of it. I also had these dry, shiny patches at the folds of my legs. Unlike the rash on my face, these patches itched like the devil. Over the last 6 months, the rash on my face has gotten worse and had spread. I have noticed for a while that the left side of my nose has a patch on it. It is now darker but it doesn't it. I have also noticed the my poor tolerance for direct sunlight has gotten worse. The sun feels like it is burning me. Not just my face, but anywhere I am hit with direct sunlight. My dilemma is getting the lupus bloodwork repeated. My rheumy tested me a few years back and ruled it out. Is it possible to have an ANA test come back negative later be positive ? Can someone have lupus but have a negative ANA.

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Old 04-26-2008, 12:00 AM   #2
Join Date: Apr 2004
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Re: Facial Rash, Dark patch on nose, dry and scaly scalp

I forgot about my scalp and hairloss. My scalp is always dry and I have chronic dandruff. My beautician can wash my hair a million times and I still have dandruff. I used to have long, full healthy and shiny hair. About 4 years ago it became dry, brittle and started shedding all over. The ends have become so thin that I have had to get 4 haircuts and now it isn't even shoulder length . Can this be caused by lupus?

Old 04-26-2008, 04:17 AM   #3
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Re: Facial Rash, Dark patch on nose, dry and scaly scalp

Blessed4Life, I'm only a patient, but here's my understanding of ANA odds in VARIOUS of lupus. I've read that in milder cases, SLE can take as long as 5-10 years or more to announce itself. Thus I think that ANA can take a long time to turn positive. However, some people NEVER turn positive, per below, most often because they have one of the "subsets", not classic SLE.

SLE: Almost all (97% or more) are ANA-positive. But bear in mind that having SLE almost always means fulfilling 4 or more of the ACR criteria.

SCLE: Only 2/3 to 70% are ANA-positive. People with SCLE may meet less than four, four, or more than four criteria. Anti-Ro is positive in 90% or more. There are two SCLE rashes: SCLE psoriasiform (looks like psoriasis but isn't) and annular (in immature form, papules; in mature form, targetlike). These rashes most often don't itch, scar &/or depigment. SCLE is considered "intermediate", because odds of major organ involvement are less than in classic SLE.

DLE: I've seen varying figures---10% & 50%---as being ANA-positive. A small percent of people with discoid lesions progress to full SLE. Most often discoid lesions *do* scar &/or depigment, but do not itch.

Have you seen a dermatologist? If you see a dermie, hopefully you'll get a sense of whether he/she knows about the variety of lupus rashes. That was my downfall! It took me a long time to realize my local dermies had never seen the rash I had (SCLE annular). Translation: if you get a dumbfounded, blank look, you should RUN!

You could browse the lupus hardcovers, found in most libraries & bookstores. Dr. Daniel Wallace's book is very thorough.

My hair became awful, like you describe yours. But that can happen anytime your overall health is off, meaning it's not enough to run with, is my guess.

What are your OTHER (non-skin) symptoms?

It's all very frustrating, and I hope you find a way to get yourself back on a better track. Bye for now, with best wishes, Vee

Old 04-26-2008, 01:40 PM   #4
Join Date: Apr 2004
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Blessed4Life HB User
Re: Facial Rash, Dark patch on nose, dry and scaly scalp

Thanks VeeJ,

I haven't seen a dermie yet, but your concern is my concern. Having yet another doctor look at me like a deer in headlights...dumbfounded!

Anyway, my non-skin related symptoms, which started when I was about 29 (6 years ago) are very consistent with Lupus and include CNS issues as well:

Painful or swollen joints - ankles and feet (especially in the morning), wrists and hands, knees, shoulders, and sometimes my hips

Muscle pain - all over, but especially my arms and legs

Muscle Spasms - all over (even at times in my vaginal area)

Chest pain upon deep breathing - this has happened a few times but not consistently over a long period of time (day or two)

Sensitivity to the sun - I dread the sun. Feels like it is burning when I am in direct sunlight. Very unusual since I used to love laying out in the sun.

Head Aches - sometimes I get pains in my head that fee like I have been hit with a blunt object. The pain comes from no where and is unexplainable.

Fatigue - I get very tired by doing the smallest things. Many times when I come home from work, I have to go straight to bed. (I also have nights where sleep won't come)

I also have these less traditional symptoms as well:

Involuntary movements and jerking of muscles in my legs, arms, face, fingers, toes, ankles,

Memory problems - I forget words, names, what I was just about to do.

Stomach pains - Sometimes, for no reason, I feel like my stomach is being ripout out from the inside. The pain comes and goes with no rhyme or reason

Bladder - for about two months now my bladder has been wacky...For a few weeks I felt like I needed a catheter because it felt like I had to urinate 24 hours a day. The past few weeks I have gone all day without having the urge to go at all. I go just becuase I figure my bladder must be full.

Bowel - For about a year I have been battling with bowel problems too ( I haven't mention this to the dr becuase I just realized I never remember to tell him). I often cannot make a bowel movement unless I message myself after urinating and even then I have to concentrate like I am telling my muscles to work with me. The strange part is that when I do feel the urge to urinate, when I wipe myself I notice that I have had bowel leakage as well. I think the leakage happens before I go to the bathroom, because I also have itching like there is a rash in my anal area.

What do you think? Could this all be Lupus related

Old 04-26-2008, 05:40 PM   #5
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Re: Facial Rash, Dark patch on nose, dry and scaly scalp

Blessed, I'm just a patient, but I'd sure wonder about lupus & anything else "systemic" that can cause such diverse problems. As one of my local drs. told me, seek a "single bullet theory" first. His comment motivated me to seek help at a teaching hospital, which may be a good move for you to consider. Are there any close to you?

And does anything turn up in your standard bloodwork (CBC & the like)? Bye for now. Sympathetically, Vee

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Old 04-27-2008, 03:15 PM   #6
Join Date: Jun 2007
Location: USA
Posts: 68
Yvette D HB User
Re: Facial Rash, Dark patch on nose, dry and scaly scalp

Wow, I myself am having a lot of health issues where I'm anemic, hypothyroid, have hypertension and that chronic fatigue just kills me. But my family medical history involves lupus, lymphoma, leukemia, heart disease, diabetes, and so much more. Right now I'm seeing a hematologist for my anemia issue where she strongly feels I have alpha thalassemia. But now knowing the family history of lupus and leukemia it raises another eyebrow with her. So it's pretty scary but the anticipation is alot worst. I want to know what is wrong with me already. I get muscle aches and soreness like if I ran a marathon. I get lots of headaches out of the blue. I work full time for a major bank and I come home ready to go to bed. I don't want to do anything else. It's horrible. So I sympathize with anybody who has these exact symptoms. I really hope your doctor finds something soon. I find out my blood results this Friday for this thalassemia thing.

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