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  • Lupus questions.please help!

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    Old 05-03-2007, 09:20 AM   #1
    jenny4480
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    Lupus questions.please help!

    Hello,I have a few questions.I am 27 years old and a female...Ok when I was a teenager my face would swell and it would kind of ooze a lil.I went to the doctor everytime this would happen and I think at one point in time a lupus test was done.It must have been negative because I am not being treated nor have I ever been.My face only did that a few times during my whole life and the last time was about 10-15 years ago...I just had my thyroids removed last year,and since have not had any problems.Until now..
    2 weeks ago I noticed I had this rash only on my arms and tops of my hands. The rash is only on the hairy parts of my arms between my elbows and the first knuckles on my hands...It itched but not alot,only when it was gently touched by hair or something like that and the sun seemed to make it itch more..I did go to a dermatologist and she said she could not identify what it was.So she did a biopsy and the results came back today.She said it may be lupus..And now I need to go have further testing done to varify what it is exactly I have..I have read plenty of sites on lupus but yet still have no idea..
    I do not have a rash on my face nor have I ever had.The stuff I would get on my face was nothing like the "butterfly rash" I have seen lupus patients have. Mine was an allergy to something.But has not done it in years.This rash on my arms and hands,do not have a certain shape.Some are circles,and others are just odd shapes,they are small,and barely raised off of the skin.They only itch like I said when gently brushed,or the sun.Now they are fading,they are leaving dry patches behind.Like dry skin that needs some major lotion .I am not overly tired.But I do tend to get alot of UTI's and kidney infections,but I have always gotten those,so thats nothing to big for me...I have always gotten headaches and migraines...I am looking for someone to help me rule what seems like lupus and what doesnt,if that makes sense? I want to talk to someone that does have this or knows someone closely to them that has it..I have questions I am so worried about...

     
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    Old 05-03-2007, 05:51 PM   #2
    VeeJ
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    Re: Lupus questions.please help!

    Hi, Jenny. I had annular (circular, meaning targetlike) lesions on my arms & torso for some years. They didn't scar or depigment & they hardly itched. I also had a LONG history of diverse problems, from childhood onward. These included fatigue, shin & joint pain, hair loss, elevated sed rate, low-grade fevers, sciatica, migraines, urinary infections & stones, anemia, weight loss, severe irritable bowel, ETC. These problems all receded my rashes, which started in my late-30's.

    To make a long story short, I was diagnosed with a "subset" of lupus called "subacute cutaneous lupus erythematosus", abbreviated SCLE. There are two different lupus-specific rashes common in SCLE. One is targetlike. The other is smaller "bumps" and looks something like psoriasis--but isn't.

    A few people with with SCLE also get the butterfly facial rash. Others also get discoid (scarring) lesions. People with SCLE tend to be HORRIBLY photosensitive.

    Many people with SCLE fulfill 4 or more of the criteria for SYSTEMIC lupus. SCLE is "systemic", but it tends to be milder than systemic lupus---but not always. Some people with SCLE do experience the same range of problems associated with severe SLE, meaning the worst problems like kidney & CNS involvement.

    In SCLE, ANA may be positive (about 2/3 of the time) or negative (about 1/3). The autoantibodies most common in SCLE are anti-Ro & anti-La.

    I can tell you this: I doctored with a lot of suburban GP's and specialists (urologists, gastroenterologists, dermatologists, etc.)---and they didn't recognize this "subset" of lupus. I finally took myself to a teaching hospital rheumatologist, and it took HIM all of about 10 seconds to cut to the chase. I've been on Plaquenil ever since, and I really protect myself against sun exposure.

    Does any of this ring any bells with you? I hope you post back. Meanwhile, sending my best wishes to you! from Vee

     
    Old 05-03-2007, 08:11 PM   #3
    jenny4480
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    Re: Lupus questions.please help!

    Hello,
    I did have fatigue,but since I had my thyroids removed that has gone away.I have always had migraines and seen a doctor for that,but that has something to do with my spin being off slightly to the right..I have always had UTI's and kidneys infections but I was born with problems with them and have seen a specialist for years for this reason..I also had weight loss and hair loss which also subsided after my surgery last year..This rash started a couple of weeks ago,I just thought it was sun poisoning or something down those lines since it does seem to itch more while I am in the sun but it doesnt burn. But after waiting for it to go away and it didnt I got worried that something might be wrong.The doctor that treated me for the rash said it "may" be lupus so I need to do more tests to be certain then take it from there..But I am scared to death!!! My kidneys are not strong enough to fight something that attacks them. I can not have any caffeine because my kidneys cant handle it.And its been this way my whole life..I am confused on how they think this is lupus that has caused this rash. I know I was tested about 10-15 years ago for lupus and it was negative. You would think it would have been caught by now,right?

     
    Old 05-04-2007, 03:53 AM   #4
    VeeJ
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    Re: Lupus questions.please help!

    Good morning, Jenny. Lupus rashes occur because of aberrant immune substances building up between skin layers. These rashes are diagnosed by overall clinical symptoms, rash appearance, microscopic determination of chemical makeup, and (if ordered by the dr.) immunofluorescent stain tests. But like everything in life, there are pitfalls. Here are a couple I encountered:

    (1) To get accurate results, skin punches are best done on a new rash, not an old one. And even on new rashes, tests aren't 100% accurate, because even within a given lupus rash type, chemical makeup can vary from person to person (or so I was told).

    (2) Dermies may fail to order the stain tests, which are very useful in lupus, because lupus rashes look totally unique under these tests.

    Regarding your previous biopsy: A rash from 15 years ago doesn't really say who you are today, medically speaking. Lupus may evolve slowly over time, or fast, meaning there is no rule. Also, even people who have turned the corner & officially have lupus can get non-lupus-related rashes (like hives, dermatitis, etc.)

    Jenny, I think your dr. is doing the right thing looking into your rash; he'd be derelict to ignore it. Hopefully it will NOT to be a lupus rash. But let's say for a moment that it DOES turn out to be a lupus rash. Would that mean that you were headed to lupus kidney problems? No, because not all people with lupus have lupus-related kidney problems. For example, I had UTI's, infections that reached my kidneys, & stones---but NOT lupus nephritis. Lupus nephritis is of another order entirely.

    I'm only a patient (obviously!), but I hope this helps you formulate more questions for your real doctors. Whom do you see next, and when? Good luck & best wishes, from Vee

     
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