[AlkiGirl]

Hi everyone, first time poster here I'm a female in my early 30s, white, fair skinned. For the past 4 months I have started experiencing strange symptoms and I'm not sure whether it could be lupus or not. First, I have developed a facial rash-- it started as splotchy red patches on my lower cheeks, then the splotches migrated and started showing up near the nose (and under the nose). It feels hot, like a sunburn, when the splotches flare up. Last night, after drinking one beer, my face flared all over-- hot pink. It looked like a malar rash except my ears were bright red too, and so was my chin. Other symptoms:
1. in September had a weird series of scaly rashes on my neck. Went away with a cortisone cream after a month; was diagnosed as eczema but they were scalier than usual. They did not scar.
2. Have developed weird occasional tingling/ pins and needles in my hands and feet. Not very frequent.
3. Had an echo done recently that showed "trace, insignificant pericardial effusion" which I found strange.
Does this sound like lupus? (or early stage lupus even?) I should mention I have had three sed rate and ANA tests done in past 4 months, and all were negative. However, I read somewhere that you can be ANA negative and still have lupus. Can someone help? Thanks a lot!

 

[Maia]

It's hard to say... the best way to rule in/out lupus in your case would be a skin biospy if that rash returns. A facial rash that worsens with alcohol is commonly rosacea.

Do you have any other symptoms besides the rashes? Joint pain or fatigue? You are right in that lupus can be diagnosed when ANA is negative, especially common with SCLE to be ANA negative (but often SSA is positive).

It doesn't sound as if you have enough symptoms in the criteria list at this point for SLE, but some sort of skin lupus is still possible. Hope this helps, and definitely keep an eye on things.

 

[AlkiGirl]

Thanks for your reply Maia! I am not presently (nor have I in the past) had joint pain. I've gotten fevers, but usually explained (eg, with severe colds or flu). At this point I will pursue the biopsy route. If this is early stage lupus of any form, I want to know it and treat it early. Had another "flare" of the rash tonight after taking a walk in cold, windy conditions, and it was unpleasant to say the least... horrible burning sensation.

 

[dudley]

Hi,

There are many kinds of lupus. I assume you are seeing a derm. Ask him to do a biopsy for discord lupus and ask for more blood work. It does not sound at all for lupus..but I would ask to have it done just to put my mind at ease.

Elaine

 

[AlkiGirl]

Hi everyone. Back again! Unfortunately my saga continues. My facial symptoms (hot, burning face, with pinkish red coloring) have gotten more frequent, and have started to resemble a butterfly shape on more than a few occasions. I have also developed very mild joint symptoms... just occasional 'tweaks' and awareness in my knees and elbows, very random in occurrence. However, all new bloodwork (including retested ANA, tested for SSAs and other antibodies like cardiolipoid) remains negative, as does sed rate and C-reactive protein test. What in the world? My rheumatologist wants to retest in 6 months but otherwise says he's leaning away from lupus. On the derm side, no luck either. My dermatologist refused to biopsy my rash saying it would 'scar my pretty face' as if I were a child. Totally offensive and made me want to scream...

What should my next steps be, besides finding a new derm Does this sound like lupus, given these new factors? I am so confused, especially with the new onset of joint symptoms.

Also, can anyone recommend a good derm in the Seattle, WA area?

 

[lazylegs]

I suggest you try posting in the Finding A Doctor forum for the dermatologist in your area. We do have some members in and around Seattle, but not sure if they see dermatologists or not.

Getting a diagnosis can be a long road. The symptoms are similar to symptoms in a number of diseases. Sometimes it just takes time for enough symptoms to manifest themselves to be able to make a firm diagnosis.

In the meantime I suggest you get all your health and life insurance set. In the future if you are diagnosed with Lupus it can be very difficult and/or expensive to get insurance.

Take care,
Lazylegs

 

[AlkiGirl]

Thank you, I will do that By the way, just looked in the mirror and my face is pale and cool. It reddens quickly, then fades. I am just baffled...

 

[x_claire_x]

malar flush

Hiya.. I had a flushed cheeks etc which worsened on drinking alcohol for years before any joint pains started. I thought my pink cheeks were just a reaction to having alcohol or when I was nervous, stressed etc. However I would also wake in the morning either quite pale or quite flushed!!! It wasn't until I saw a rheumatologist that it was asked about on consultation, (I was nervous). He didn't mention much at the time but just monitored my bloods and me for five months...until I had the flare when it turned into a very severe rash across my nose, up to forehead and cheeks... delightful :blush: I was swollen too, puffy eyes, lips... elephant woman! Your colouring may have nothing to do with Lupus, but alot of assessments are in watching and waiting which can be frustrating. I suggest you keep a journal of events so that you can show medical profession at any future appointments...be honest about pain if you have any and score it out of ten so they get the hang of how mild or not it is......all the best and take care.
XClaire

 

[AlkiGirl]

Thanks XClaire. Your response is very helpful and interesting; I am indeed keeping a symptom journal to track this more effectively. A question for you: were the red cheeks your first symptom? (sounds like they were). How long were they usually red... did it come and go in an hour or two, or was it more prolonged and frequent than that? Were they the typical butterfly pattern?

My derm is telling me this is early-stage rosacea (a couple bumps formed at one point), but I am seeking another opinion, especially because of the joint issue.

 

[x_claire_x]

Hiya.. yes that was the first symptom for me, I had what I thought was a flushed complexion for about five years before anything else.. I just thought it was worse at certain times ie.. social events! I would joke that it always settled down after the first glass of wine, or once my nerves had subsided etc etc..(after and hour or so) I would always be rosy after a walk outside, especially when windy and cold or in bright light. Now I know that was very likely a malar rash/flush from right back then. I would say that my cheeks were def in a butterfly wing sort of shape but not particularly the bridge of my nose.. until I flared for the first time last Nov, when the rash raised and def was more butterfly right up onto the forehead...gorgeous I was!! Since treatment my complexion has settled alot, though at my rheumy appt two weeks ago he said I still had the rash!! and there I was thinking I was looking pale and interesting, so it just goes to show that we look at things differently Hope that helps and with your journal you find out what the cause of yours is... all the best,
Claire X