Thursday, December 6, 2007

You Know You're Lupie If...

If only figuring out if you have lupus were as entertaining as a Jeff Foxworthy joke, but most times, it's not. It can be a very frustrating, confusing, and tiring process.

I received an e-mail recently from a nice young woman who was upset because her doctor seemed unsure of her lupus diagnosis after he told her she had lupus and started treating her. That is a very frustrating experience, but lupus can be a hard thing to diagnose. That's why doctors came up with the 11 Criteria for Diagnosing Lupus. Doctors consider that if patients have four of the 11 criteria, the patient likely has lupus. The list reads as follows:

Malar rash-- the malar rash is a rash that you get on your cheeks that runs across the bridge of your nose. It's often called a butterfly rash because it looks like a butterfly. My malar rash is only noticeable to me and those who love me. It's very faint. I actually have one now, and I'm guessing no one at work or my husband notices. (Not that he doesn't love me. If I were of a mind to point it out to him, he'd say, "Oh yeah. You do." He's just not a visual person). My therapist was actually the first person other than myself to notice my malar rash. I walked into her office one day, and she said, "What's wrong with your face?"

Sun sensitivity--for me, this happens in many forms. Doctors generally will look for a rash in response to sun exposure. I get this, but also, my malar rash is worsened by sun exposure. Not only that, but the sun hurts. When I go out in the sun, it feels like someone is sticking lit matches onto my skin.

Discoid rash--I don't have this one. A discoid rash is a raised, scaly rash. I'm not very familiar with the appearance of this rash, but I'd guess it's disc shaped.

Mouth sores--my least favorite lupie symptom. Before I received lupus treatment, my mouth sores were so bad. I was miserable. They were on my tongue and on my cheeks. I even had sores that didn't hurt on the roof of my mouth. I didn't even know those existed until the doctor told me about them. Sometimes lupies get sores in their nose, but I don't.

Joint pain--this is my most persistent lupus symptom. My joints always hurt, but the pain does range from bearable to excruciating. Popular joint pain sites for me are my feet, hands, knees, and elbows. Sometimes, I'll get pain in the hips, ankles, and even on my ribs.

Swelling of the lining of lungs and heart--I'm not very familiar with this symptom. I once had a doctor tell me I had swelling of the heart, but then a few weeks later, he said I didn't.

Kidney disease--I don't have this one, but my sister does. My doctor actually just told me that my auto-antibody that's linked to kidney disease wasn't high but needs to be watched. It would be nice if I could remember which auto-antibody that was. If I did, I'd be nice and informative.

A neurological disorder--if I were being honest with myself (which I guess I'm being now), I'd go and get this one checked out. Doctors consider that lupies have neurological disorders if they have seizures or psychosis, but maybe they should examine this a bit more. Lupies also have something called "lupus fog" which is a bad case of forgetfulness. I also get these horrible headaches. I fight off depression. I get dizzy. I've fainted and awaken confused twice in the past few weeks. I had a brain scan about five years ago, and the doctor said I had plaque on my brain which is common for someone with lupus. I guess I should go to a neurologist again or at least tell my rheumatologist of my latest problems. Also, when I type, I'll type words that make no sense. Instead of typing, "I need to go to the store." I'll type, "I need to go to the cookie." It's really weird. And lately, I'll be talking and lose my thought mid-sentence, or I'm not able to remember common words, or I'll mix up the structure of my sentence.

Low blood count--this one has caused my doctors no end of confusion and worry. My anemia gets so bad, my doctors often worry of heart failure. Lupies can have low red count, platelet count, or white count. The reason why this one has been hard for me and my doctors is that my low blood count is caused by three things, lupus, iron deficiency, and sickle cell trait. Lupus anemia can be treated with the usual lupie treatments. Iron-deficiency anemia is treated with iron, of course. From what I'm told, lupus anemia is not helped by iron treatments.

Positive anti-nuclear antibody test--this test was an interesting one for me. My doctor ran this test on me for years because she often suspected lupus, but it never came back positive. Then my cardiologist, after he told me I had the swelling in my heart, ran anti-nuclear antibody test, and it came back positive. My rheumatologist at the time said that different labs can have different results.

Positive results for lupus indicative blood tests--This would include a positive anti-double stranded DNA (I've got this one), anti-Sm, anti-phospholipid antibody, or a false positive syphllis.

Let me make sure I didn't miss any... Nope, they're all there, and I've been diagnosed with seven (eight, if I counted the heart swelling, which I don't, and nine, if I counted the neurological disorder, which I won't) of the 11 criteria. I've found that doctors won't diagnose lupus if you don't come back with the positive blood tests, and you could have nine of the 11 criteria. I had met five of the Criteria and there wasn't a diagnosis until the blood test came back positive.

Let's try this again. You may be lupie if you have a malar rash, mouth sores, sun sensitivity, discoid rash, joint pain, anemia, kidney disease, swollen heart or lungs, positive anti-nuclear antibodies, positive lupie indicative tests, or neurological disorders. That's a mouthful. Mr. Foxworthy, your job is safe.

Have a lupie day!



Chari said...

Hi! I found your blog while searching about Lupus. I was diagnosed with mild Lupus in April. My ANA was positive. Plus I have joint pain (mainly in my hands, hips, and elbows), anemia, fatigue, mouth sores (horribly for 10+ years), sun sensitivity, and a slight malar rash. I'm lucky so far in that I have no internal organ involvement. Anyway, I just wanted to let you know I enjoy your blog. Have a nice day!

The Lupie Kat said...

Thanks for commenting on my site. Nice to know someone is reading it! :)

J said...

I'm currently undergoing testing for Lupus. I've had bizarre problems for years, and felt like it must be autoimmune, but never had a doctor that really thought anything special was going on... until THE RASH appeared on me last week along with severe joint pain. I, of course, don't want a lupus diagnosis, but it would be nice to know what's going on with my body and have those around me know as well. Thanks for your blog. It is very helpful to hear a human perspective with such great info. Take care.

Lynette said...

I found your website while looking up info on Lupus. I was diagnosed about two years ago with SLE. I enjoyed your site and found it very uplifting and informative. I agree that music can be a motivator, and also when I am around people that make me laugh. Thanks for sharing your experiences and thoughts.

Terry said...


I was wondering what your rash feels like? Like you my rash is very faint and only I really notice it. It is not itchy but feels sort of tingly.
I am presently waiting for my bloodwork to come back. I was diagnosed with FM two years ago but I don't think it's FM. I am pretty sure it's lupus.

Thanks so much.

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Shanea said...

Hi. I realize this blog post is from a few years back, so I'm not really expecting a reply, although I'd really love it if someone could. I'm 18 years old, and starting to wonder if I have lupus. A few days ago, I went out in the sun, when it was really warm here and spent a few hours in it. After I came in, my face started it hint, and I later noticed I had a rash. It was raised, and not really dark, but it was definitely noticeable. I did have the rash on my cheeks, and nose, and even a little on my chin. I didn't really realize if it took the shape of the butterfly rash, and now I can't tell because it's faded. Last summer, Ina's the sun sensitivity rash too, but last year it didn't itch. I also get the mouth sores, but I always thought that was from my wisdom teeth that are coming in, I never even considered lupus for that. I also have a lot of anxiety, which I read is really common with lupus. This last sun sensitivity rash/outbreak I had also gave me a severe lower backache, some knee pain, and just an achy feeling. I've also battled depression, and get headaches really often, a few times a week usually. I don't have insurance, so I really want to make sure there's a good chance of me having lupus before I decide to go in and pay a lot of money for nothing.

Thanks! And I really hope someone can reply, to give me some insight. This is starting to really worry me.

Lisa said...

Hi! I found your blog by searching for Lupus rash issues. I was diagnosed w/ Lupus about 5 years ago by my dermatologist. She said I just had the Lupus rash, and not the systemic Lupus, yet. I saw another derm. a year later later (after the meds I was on caused 2 miscarriages) and he said he didn't think it was lupus. That doctor passed away so I've been seeing my primary dr. for this since. He think's is rosacea instead of Lupus. He is considering referring me to a derm. I'm going to see him Friday so I wanted to express to him how my skin feels in the sunlight. I'm on doxycycline right now to help w/ the rash. but that only helps keep it from scaling, it still gets red and it still hurts. I found your information to be very helpful as I have several things you listed. I had an MRI once on my brain and all looked well. I just figure I'm in the early stages of Lupus and there isn't enough evidence for the doctors to diagnose by test results. Thanks again for your information.

Deepthyrajendren Nair said...

i have a malar rash and photosensitivity,bt no other it sle..?