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Old 11-14-2007, 10:28 AM   #1
Join Date: Feb 2007
Location: NE, USA
Posts: 59
Sandpuff HB User
Butterfly rash questions and my symptoms.

Can anyone tell me more about the butterfly rash? Some mornings when I go to put my makeup on my face is red, mostly across my nose and cheeks. It's not raised and I can cover it pretty much with makeup but my face looks very red if I don't put makeup on. I have had this happen for quite awhile but I'm now wondering if it could be the butterfly rash. Some days it's there and some days it isn't. I took a picture of it yesterday and it looks pretty butterfly-ish in the picture but maybe I'm reading too much into it.

I've been having several other symptoms such as fatigue, muscle stiffness all over my body, aches in my hands, tingling in extremeties and in my face and chest pain. I recently saw a neurologist because I have myoclonus (muscle jerks) and he asked if I had seen a rheumatologist and I haven't.

I have been posting in a few different forums because I have no idea what's wrong with me. But I'm having a hard time functioning most days and would really like some answers.

I also have been getting other mild rashes in my scalp, in my armpits and on my chest. I've also had a lot of night sweats in the last year and my temp sometimes goes up to 100.

A doctor suspected lupus earlier this year and did an ANA which came back negative and so it wasn't pursued any farther (he was an oncologist). I have an appointment with a rheumatologist in 2 weeks and I'm hoping (but not expecting) to get some answers.

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Old 11-15-2007, 02:25 AM   #2
Join Date: Feb 2004
Posts: 4,960
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Butterfly rash questions and my symptoms.

Sandpuff, To me it makes sense for you to see a rheumatolgist. A good rheumie should take a lifetime medical history. Have you seen the "4 of 11" criteria used to Dx systemic lupus? They are in one of the "sticky posts" (permanent info posts) at the top of the thread list. You do not have to meet the criteria all at once: think instead of checking each off in indelible ink. So that's why taking a LIFETIME history is critical.

Blood tests can vary in lupus, I've read & been told, because some values will wax & wane with flares. Also, some labs are better than others at running these tests, which is another reason to see a specialist (i.e., who'd be using the best labs for this branch of medicine).

Yet another reason to see a rheumie: I found my local drs. didn't understand just how varied lupus can be. I finally went to a teaching hospital rheumie, who suspected immediately that I had the SCLE (subacute cutaneous LE) variant, which further testing confirmed. In it, only 70% or so are ANA-positive. I stayed ANA-negative (my luck!), which really frustrated Dx. This is possible in SCLE. More likely yet in DLE (discoid lupus). Rare, but not impossible, in classic SLE. [So I was told.] Bottom line? ANA alone is NOT diagnostic of lupus & was never intended to be. That's why there are 11 criteria, not one.

Many rheumies run the specialized autoantibody *simultaneously* with ANA, as opposed to waiting for a positive ANA before ordering tests for specific antibodies (e.g., anti-ds-DNA, anti-ss-DNA, anti-Sm, anti-Ro, anti-La, RF, etc.)

There are several excellent lupus hardcovers in most libraries & bookstores. One author is Dr. Daniel Wallace; another is Dr. Robert Lahita. While reading won't get you a Dx, it can help you ask better questions.

While I hope you don't have lupus, if you DO, you could benefit so much by knowing & being treated. FYI, many people do remain pretty mild. So hang in there, OK?! I hope you keep posting & that you have a good appt. Best wishes, from Vee

Old 11-15-2007, 01:47 PM   #3
Join Date: Feb 2007
Location: NE, USA
Posts: 59
Sandpuff HB User
Re: Butterfly rash questions and my symptoms.

Vee - thanks so much for the info and support. I am glad I'm seeing a rheumatologist. It seems that's the one specialist I haven't been to! I am feeling really achy today and just pretty much am sick of this. It would be one thing if I knew what was wrong, but not knowing what's wrong and feeling bad day after day is starting to get to me. Thanks for being here for me and sharing your knowledge. I did check out the criteria and feel it's a good idea for me to see someone about this. Take care!


Old 11-15-2007, 07:01 PM   #4
Join Date: Feb 2004
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Re: Butterfly rash questions and my symptoms.

Michelle, I'm glad you're pondering those criteria. Until I read them (and repeatedly), I had no way of knowing why my local appts. were getting me nowhere. The teaching hospital doctors I finally saw were so different; they asked much better questions, did different tests, and I got answers from them in less than a month. So, good luck! Drop us a line when you can, OK? Best wishes, Vee

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