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Old 06-05-2007, 09:44 PM   #1
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I am confused about the Lupus I have

Ok I had a rash that started around the 23th of April of this year.I went to a dermi who did a biopsy.It came back strong possiblity of Lupus.So I went and did more tests,this time an ANA and something else.Those came back again strong possiblity but not positive.So I went back and did another round of tests and these tests did say Positive for Lupus but they were a little worry about the type of Lupus I have.They said the chances of me having organ involvment are rather low,but that chance is still present.So I went again back for another round of testing.The results came back and its not organ involved.Which is great!! They said its Lupus of the skin.. Ok so my questions are,what symptoms should I be prepared to have? I have looked for symptoms for Lupus of the skin but I am really not getting any answers. The doctor told me I have to wear sunscreen at all times when I am in the sun.Told which spf I needed and what blockers need to be in them..Some of the symptoms of Lupus,are shortness of breath,headaches and migraines,rashes,IBS and several others. But would those symptoms apply to my case,since there is no organ involvement at this time? She did say I would have to go get testing every 6months to a year,because organ involvement can happen at anytime.So if someone would please clarify to me,what she was trying to explain?

Last edited by jenny4480; 06-05-2007 at 09:48 PM.

 
Old 06-06-2007, 02:46 AM   #2
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Re: I am confused about the Lupus I have

Hi, Jenny. Imagine your immune system going amok & creating aberrant antibodies that turn on your OWN body, instead of attacking the usual culprits like viruses & bacteria. And that you can't 100% guarantee what body parts or systems may be attacked. That's lupus, in a nutshell.

What kind of skin rashes were you getting? Discoid (scarring)? Subacute cutaneous (nonscarring, either targetlike or a form that resembles psoriasis)? Malar ( = butterfly facial) rash? From what I've read, the "odds" of major organ involvement vary somewhat depending on the kind of rash. But the bad news is that ALL carry SOME potential for more serious damage, which is why follow-ups with your doctor are so important.

Some people stay skin-only, with or without fatigue & joint pain. On the opposite end of the scale, major organs & systems are attacked: kidneys, central nervous system, heart, lungs, blood (like anemia), liver, etc. And many people fall between these two extremes. THERE ARE NO RULES.

You really should browse one of the lupus hardcovers found in libraries & bookstores. OR, try the search box at the upper left of the screen. The subect is so complex that no dr. can do it justice during an appointment, nor can any of us cover it adequately in posts on this board.

Also, because you "presented" with one kind of rash doesn't mean you can't get other kinds of rashes. So even if your initial rashes didn't affect your scalp or didn't scar, you should protect your head by wearing hats, because you don't want scarring lesions that can cause permanent hair loss.

I hope this provides a head start & some reasons to do some deeper reading. Best wishes to you & take good care, OK? from Vee

 
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Old 06-06-2007, 10:25 AM   #3
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Re: I am confused about the Lupus I have

I am not really sure how to explain my rashes to you..They started out like hives kind of.Only itches when exposed to the sun,or humidity. Now that I have been staying out of the sun/or wearing sunblock if I am out in the sun they are not swollen or red.They are discolored to a lighter tone than my regular skin color. they kind of remind me of scarring from burns. I dont have a butterfly rash anywhere on my body. I am looking for a UV blocker hat,and some UV blocker jackets or cover ups,to protect myself as much as I can. I am just so curious.I am only 27,and have 3 young daughter to care for. I want to know all I can from people who have this same thing to help me get my facts clear and tips to help protect myself.

 
Old 06-06-2007, 05:23 PM   #4
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Re: I am confused about the Lupus I have

Jenny4480,
Like Vee said, try to read up on Discoid Lupus or Sub Cutaneous Lupus, that is probably what you have if it is not SLE (Systemic Lupus) which is the form of Lupus that is systemic and can involve major organs as she mentioned. My main suggestion is that either of these is not life threatening and involves the skin only....DO avoid the sun as much as possible so you don't aggrivate your condition. Some people with this form of Lupus can go on to develope SLE, but the percentage of people that will is about 30% I believe. Anyone jump in and correct me if I am wrong. I have SLE with organ involvement but it is under control for now and that is a blessing. So try not to worry about your condition and enjoy life with your 3 daughters. Just watch the sun and go out in the shade and avoid any type of ultra-violet light, including florescent lighting and tanning beds. Other than that, just keep your eyes on your skin and watch for anything to develope, but DON'T dwell on it too much....it isn't systemic and that's the way you want it to stay.

Smile,
Connie

 
Old 06-06-2007, 10:26 PM   #5
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Re: I am confused about the Lupus I have

Thank you for taking the time to respond. Are there things I need to do to avoid it going into systemic lupus? I am trying not to dwell on it,but I am curious about alot of different things..My doctor kept asking me if I get alot of cold sores or nose sores.I dont but my 8 year old daughter gets cold sores/fever blisters one after another it seems.Should I go and get her tested? She doesnt have nor ever had any rashes,but I am always been worried about the cold sores she gets. I have took her to the doctor a couple of different times,they just said they are fever blisters and some kids get them before they come down with something.But I know several times,she has not been sick prior or after she gets them.

Thank you very much for your tips! I hope you stay well and your lupus stays under control!!

 
Old 06-07-2007, 03:23 AM   #6
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Re: I am confused about the Lupus I have

Jenny, I understand what you've described the same way Connie does. Your dr. *seems* to be saying that right now you have one of the lesser forms of lupus, meaning DLE (discoid lupus erythematosus). Best way to find out: just ASK HER how she's classified your disease!

As to what you can do to care for yourself: you obviously are taking sun protection seriously (good for you!). As with any chronic problem, you should report any new or worsening symptoms to your dr. You could keep your own personal file of your blood, dermie, other test results (makes it easier if you have to change drs.) Schedule all check-ups your dr. suggests.

I forgot to ask: did your dr. give you medication for this? You may or may not need any now, is the standard thinking, I think... If you have ONLY a rash, you *may* not need any, *if* you can get the rash to go away & stay away, that is. (In lupus, don't think of the rash as "just a rash". It's really an external sign of an underlying immune disorder.)

FYI, people with problems beyond rashes---like fatigue, joint pain, etc.---are typically given the lightest type of lupus medication = an antimalarial. But where there's ANY kind of major organ involvement, stronger drugs are absolutely required.

As for your daughter's cold sores: if her dr. says that's what they are, then they are not the same thing as the oral ulcerations commonly seen in lupus.

Hope this adds a little more for you to ponder. How complex this all is, huh? It makes you understand why even DOCTORS can't explain it all in one sitting! I think you're on the right track by reading, asking questions, and building your understanding bit by bit. Take good care. Sincerely, Vee

 
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