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    Lupus Findings
    avatar
    An_206349 posted:
    I was just diagnosed with Lupus a couple of weeks ago. The doctor took a biopsy of the rash on my chest and sent it in. The results cames back indicating Lupus. I was not even sure that this could be diagnosed this way. I went back into the doctors office last week for labs. The labs came back today good, therefore the doctor is indicating that I have Lupus of the skin only. If I stay out of the sun which causes the flare ups everything should be fine. However she mentioned that she wants to complete a UA every 3 months to check the kidneys. I have a lot of questions / concerns. Can someone out there help me out?

    1.I have 3 kidneys, but only 1 works (hence doctor asking to check every 3 months) If I only have Lupus of the skin, then why check the kidneys? 2. When I break out into a rash, will the only symptom just be the rash, or will it casue a complete flare up? 3. How ofter should my lab works be ran to make sure that skin Lupus is all that I continue to have?
     
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    geneva45 responded:
    I would go to a different doctor. I have never heard of having just Lupus of the skin. A lot of people break out from the sun and that is just a reaction to the sun. Blood work must be done to determine if you have Lupus. Good Luck to you
     
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    lisaisweavebee responded:
    Hi,

    There are four different kinds of lupus - discoid lupus (which is mainly the skin but MAY affect other joints/organ), SLE which is the systemic kind (meaning your whole body is a playing field for the disease), drug-induced lupus and neonatal lupus. You can have discoid lupus AND SLE which is probably the reason the doctor is checking your kidneys, as kidneys are prone to be one of the targets for SLE, to make sure you don't have both.

    Biopsies of rashes are a common way to look for discoid lupus (I've had two biopsies)

    Everyone is different concerning symptoms of a flare - so whether your rash will be all there is or the start of joint pain and other problems is up in the air. Each of us experience flares a little bit differently - which makes it so hard for physicians to Dx and treat.
    What your labs show will be a deciding factor in how often you should have labs repeated. I think 3 months is about average if all is going well.
    3 kidneys?? I've never heard of three kidneys but if only one is working than you really need to keep on top of your symptoms and alert your doctor if you have problems.
    Lisa
     
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    Lupylisa44 replied to geneva45's response:
    Geneva:

    There are two kinds of lupus that affect the skin. Discoid lupus and Subacute cutaneous lupus.
     
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    HG1948 responded:
    Anon,

    I was originally diagnosed with subcutaneous lupus only. After a few years, my diagnosis was changed to SLE after I began to manifest more symptoms.

    I seemed to be left with a worsening of symptoms after every major flare. Sun exposure triggers lupus flares for me.

    HG
     
    avatar
    mballabmb123 replied to lisaisweavebee's response:
    Lisa,

    Thanks for your response. Since I posted, I was able to obtain a copy of my final dermatopathology report. Diangosis indicated lupus erthematosus. I can not get the dermo doc to return my calls to asks questions, etc. Although the ANA test came back negative, I strongly believe that SLE is my problem. My aunt has SLE and has to take very strong medications.

    I really have 2 kidneys. One is broken in half like a horseshoe kidney. The other is functioning fine. I have several signs of SLE, but can't get the dermo doc to call me back or refer me over to a rheumy.

    I have night sweats, can't sleep due to pain (especially pain in my left legs like restless leg syndrome), break out when exposed to the sun, chest pain sometimes which is worse when taking a deep breathe, pain in all of my joints, sores in my mouth, etc.

    What would you do at this point? I really do not want to start all over in this diagnosis process again. Looking for any advice.
     
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    mballabmb123 replied to Lupylisa44's response:
    What does lupus erthematosus mean? This is what was printed on my final dermatopathology report.
     
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    lisaisweavebee replied to mballabmb123's response:
    Hi,

    Do you have a family doctor? If you have your copy of the lab report take it to your family doctor and ask for his advice/referral to a rheumatologist. You shouldn't have to start "all over" but I am sure the rheumy will do lab work to confirm Dx.

    Systemic Lupus Erythematosus or SLE for short is the formal name given to the disease that affects body systems.

    Keep us posted on how you're doing!

    Lisa
     
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    mballabmb123 replied to lisaisweavebee's response:
    Thanks for your response again. Yes, I have a family PCP, but he is the father of my dermo doc who I can't get to call me back. I am in Northwest Arkansas where all the docs either know each other and / or are related. I have the copy of the dermo pathology report but not the ANA lab test results. When I tried to call the rheumy doc (which is the only one here in my area), I was informed that I would need a referral to get an appointment. Not to mention that his office is booked out 6 - 9 months for new patients. According to his office, they receive the referral and then put patients in order of need to make the appointment.

    Do you know if it is possible to have a negative ANA test but still have SLE? My lab test run previously at my PCP show low MCV, low MCH, lovw MCHC, high RDW, high neutrophils % and low lymphocytes %, These results were pretty much the same on 05/04/10 when I saw the PCP and also on 05/25/10 when I saw the gyno. The only difference in the two lab test was the gyno lab test also showed high gra%. I am not sure how all of this relates, but I do have a history of being iron def amenic.

    I also am really concerned about my one and only working kidney. Shouldn't my urologist be taking care of this? Nothing against the dermo doc, but this only make sense to me.
     
    avatar
    lisaisweavebee replied to mballabmb123's response:
    Hi,
    Actually, it is a nephrologist (kidney specialist) who should be taking care of your kidneys...or "kidney" as the case may be, if you start spilling protein in your urine.

    Have you tried to just make a appt. with the dermatologist and ask him your questions point blank instead of waiting for a phone call back? Or you could see your pcp even if he is the father - you don't have to mention that his son wouldn't return a phone call if his life depended on it! You should just ask him what the next step is regarding your care and that you are concerned about your kidneys...because he is the one who is suppose to coordinate everyone.

    While it is rare, it is possible to have a negative ANA but still be Dx with lupus. A person is said to have SLE if four of eleven criteria are present at any time. This criteria is a mixture of symptoms and bloodwork. The Lupus Foundation's website is a great resource for information.

    Lisa
     
    avatar
    David Zelman, MD responded:
    You could lupus limited to the skin and though this would make you more likely to also get organ involvement and thus systemic lupus. It would be appropriate to look for this regularly by checking urine looking for protein and also kidney function by blood test perhaps every 3-6 months initally but later perhaps annually if there has been no problem.
    When you flare it may only be in the skin. Plaquenil is often used to treat skin problems with lupus as well as creams containing steroids.
    I am not sure about your kidney situation otherwise
     
    avatar
    Lupylisa44 replied to mballabmb123's response:
    Definition of erythematosus:

    http://www.biology-online.org/dictionary/Erythematous
     
    avatar
    LitLupy replied to geneva45's response:
    Lupus affects different people different ways. When I was diagnosed, I couldn't feel a thing, only the fact that I was tired and would get rash and start vomitting for no reason. I went on like this for years, some years nothing and others where I had to be hospitalized for weeks at a time. Now it has finally matured and is causing all kinds of problems.

    The rash might be the start of the Lupus, but definitely this is not the only symptom there is for a Lupus diagnosis, there is the ANA factor, platelet counts, rdw and nuclear blood tests to consider. Just keep relaxed as hard as that may seem sometimes and remain with the most positive attitude you can obtain.

    Believe me, if rash is the only symptom you have right now, treasure it. You do not want the rest of it. I hope it's only an allergy or something less serious. Good Luck.
     
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    LitLupy replied to mballabmb123's response:
    See your general practitioner and have him refer you.
     
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    mballabmb123 replied to LitLupy's response:
    Got my PCP to complete the referral last week; however when I called today to get the rheumy doc apt, was advised that they are not taking any new patients with my insurance. The only other rheum that is any good is 1 1/2 hour drive away. I called their office today and I am now booked for an apt 07/06/10. I have heard good things about him, so I am excited to finally be able to see a doc who can help. I currently still have fatigue, sore joints, sores in my mouth, restless leg syndrome when I try to sleep at night, staying out of the sun due to the rash that I get each time when I am out over 30 minutes, had the biopsy come back positive, but ANA come back negative, lupus in the family. It appears that this is Lupus. I just want to be diagnosed and treated correctly so I can go on with my life with the changes needed to be able to identify if things go into a flare. I am also currently in treatment for anxiety/depression. I am sure that this has come about due to the pain, etc that I have not been able to explain or work around this past year. The only reason I got started down this path was due to using 180 hours of sick leave within the last 9 months. My boss was questioning why and I could not explain it. I am currently the only working person in a family of 6 and can not afford to lose my job. It all started with the rash from going out into the sun. Believe it or not, I actually bought a hot tub back in March 2010 which happens to have a Lupus seat. I guess an angel was sitting on my shoulder and that is why I made the purchase. Otherwise, I never make expensive purchases like this, it was so out of character for me. Now, I spend 10-20 minutes every night in the hot tub prior to getting into bed and it has helped me sleep (of course on top of the sleeping aid that my pcp prescribed due to chronic fatigue). At least now I am sleeping for some time prior to waking up in pain. The restless leg syndrome pain is really bad at night and when I get up in the morning it is really hard to get going due to stiffness. I will keep my head up and stay positive and appreciate having folks like you that I can reach out to with questions / comments. Stay in touch and I will be good news after the rheum doc apt on 07/06. Thanks again for your response.


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