Does Anybody Know Anything About Lupus?

[cgilsing]

Sooo....Lupus is one of those things that has been in the back of my mind the last few months...I know that if you have celiac disease that your chances of developing lupus are increased. Lupus first came to my mind when I was looking on the internet about six months ago and saw a picture of the "butterfly" mask that is common to Lupus. It's a defined red rash that is butterfly shaped across the cheeks and nose and normally lasts a few days to a few weeks. When I saw the picture it took me back a little because it looks JUST like what happens to me when I drink. I don't mean a get a little flushed after I've had one too many....After 1/2 a glass of wine I've been known to have a florecent red mark across my face. It's very defined.....strange Anyhoo I chalked it up to rosacia because it usually happens when I drink (although it has happened for no particular reason) and goes away in a matter of hours. Then about a week ago I developed an itchy rash all over my arms and legs. At first I thought it might be poisen oak, but I haven't been anywhere that I could have got that. I'm now realizing that its being caused by sunlight. If I'm outside for even a minute I'm breaking out in this awful rash!! I started looking online, and there it is again...lupus. Apparently people with Lupus are prone to a photosensitivity rash. Does anybody know anything about this? How does one know if they have lupus? Do I have reason to be concerned?

[Lymetoo]

I don't know very much about it either. Why don't you find a message board like this one and ask a few questions?

[kb8ogn]

I have Lupus and those are classic symptoms of lupus. So are extreme fatigue and joint pain. You can also experience pain in your organs(liver, kidney, lungs).

For an excellent resource of information just about lupus, check out the lupus foundation, www.lupus.org

another message board I frequent is www.butyoudontlooksick.com

Make sure you read the spoon theory. That message board is for ANY invisible illness and there are a lot of knowledgable and very nice people there.

Also, any questions, just let me know, I'll do my best.

Lupus is hard to diagnose, like any autoimmune disease, because it mimicks a lot of others. Find a good rheumatologist, get your ana testing and be persistant. I didn't have a + ANA for 5 years. But I had a doc that was persistant. Start keeping a health journal with information such as your butterfly rash and your sun sensitivity. Be very exact if possible. I CANNOT go in the sun. I will end up in the hospital.

Lupus can affect everyone differently. So, what I experience may not be the same as what you do. But, I think it is worth checking into.

I hope this has helped you.

[Lymetoo]

kb8...I thought about my reply to you at midnight last night. [while in bed] and I was afraid I sounded too curt and not helpful. That was not my intent. I honestly don't know much about Lupus and it sounded like you had already done research on it. That's why I mentioned going to a discussion board like this one.

Sorry if i hurt your feelings or anything.

[tiredofdoctors]

One of the main differences in Rosacea vs. Lupus with regard to the facial rash is that Rosacea causes redness throughout the butterfly area, including the nasolabial folds. With lupus, the nasolabial folds remain white, hence TRULY looking like a butterfly. That's one way to alay some of your fears. Also, Rosacea reacts to alcohol the same -- its because it makes the blood vessels dilate. All it takes is one shot of tequila, and I look like my face is going to catch on fire! I've had more Lupus tests than any person I can imagine because of my face . . . but it's still negative. The rheumatologist continues to test, but each time says, I know that I'm testing, but I want to be sure. Your nasolabial folds are so RED, though. Dermatologist says Rosacea, too.

I had joint pains for quite some time, which is why they kept insisting that I had some sort of rheumatological disease . . . it was due to the Hashimoto's. Even though I was taking thyroid medication, because of the antibodies, my body was rejecting it, and I was not getting enough thyroid hormone to keep me free of the symptoms.

I would still keep a strong watch on the Lupus possibility. Some forms of lupus are very benign . . . you have minimal symptoms, minimal involvement throughout your body. Some, though, are bad babies . . . very wide-spread throughout your body, a lot of organ involvement, and much damage. For that reason, you should have a full Lupus panel completed -- if only to establish a "baseline", even if it's negative. They should do an ANA, an RA, a Sed Rate, Lupus panel, and Anti-Cardiolipid antibody tests. It wouldn't hurt to have a TSH, T3, T4 and thyroid antibody tests, as well.

Sorry to bombard you with TMI, but hope some of the info helps. Take care of you . . . . .

Hugs,

Lynne