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Heidirenn

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 #1 
My first visit to the rheumatologist is tomorrow.  My biopsy a few weeks ago came back as being "consistent with lupus" from rashes on my face. Dermatology referred me to rheumatology for more tests to find out what type of lupus I have.  Any idea what to expect/anything you would recommend that I ask, or just let them do whichever tests they need to do? I am guessing the latter, but just thought I'd ask. I am thinking I do not have SLE but discoid lupus but more tests to find out.  I am so new to all of this. We are heading on vacation to Florida in 18 days with my kids so I am hoping that they will have the additional tests back by then...four days in Disney and the beach. All of this is so frustrating as I absolutely love the sun! Does the sun always seem to fuel lupus? Sorry for all of the questions. 
Robinj

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 #2 
For most of us the sun is our enemy. It increases disease activity, not just rashes, but things you can't see...
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upstater

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 #3 
A knowledgable and good rheumatologist will know what tests to run and will listen to your concerns.

I would guess, at minimum, they would run an ANA (anti-nuclear antibody test), CBC (complete blood count), CMP (metabolic panel), ESR (test for inflammation), urine....and there are some more specific antibody tests for lupus, such as dsDNA, Smith/RNP antibodies, SSA/SSB antibodies and complement levels. 

Hope it goes well!
upstater

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 #4 
Good luck today Heidi!!
McKenna

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 #5 
Hi Heidi,

Hope your rheumy visit went well.

I just wanted to comment on the sun and Disney.....it can be done!  When we go I load on sunscreen, hats, uv umbrella and there is a wash in product with UV protection.  I think it's by the company that makes Rit dye and it's called Sunguard.  I am getting ready to purchase it for our trip, which will be in 24 days!  If I remember correctly, it only works well on cotton clothing though.  I found it on Amazon.  Also, I try to stay in the shady areas as much as possible.

For the beach, that's a little tougher since there's not a lot of natural shade.  I would look into a UV beach umbrella or pop up shelter.
Heidirenn

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 #6 
Thank you so much for the advice! My rheumy visit went very well.  She said that if it is discoid, I currently have a mild case.  I need to be vigilant about sun protection though. She also said that because I have other autoimmune issues (I had graves disease and deal with psoriases currently), that there could be a chance that another auto-immune disease could be mimicking the rash to look like discoid lupus, even with the positive biopsy, as sometimes errors with the biopsy can occur.  She said based on my systems she is probably 99% sure I am not dealing with systemic lupus (which I agree too), but she did a whole bunch of tests to develop a baseline I'm guessing. I counted 15 test tubes at the lab.  She said that most will come back soon with a few taking 4 to 5 days.  I will update you on the labs.  Thank you so much about the advice at Disney. Of course, I just bought 3 cute pairs of shorts! If I am really vigilant about the sunscreen, I am hoping to still be able to wear shorts but cover up the top half of me along with a cap, reapply sunscreen a lot.
upstater

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 #7 
Neutrogena makes a Helioplex line. That was what my derm recommended. I thought it might irritate my face, but now I think my face is just plain irritated. But the spray seems like it would be good for your body. I just bought some, but haven't used yet. Seems like it would be easy to reapply. 





 [image] 
Then they also have a very liquidy variety that she recommended for face - that can even be mixed with your regular face lotion. It's called "Ultra Sheer Liquid". 

15 vials - seems thorough!! Hoping for good results!




Moiraine

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 #8 
I hope that you get good results.
Heidirenn

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 #9 
Thanks so much - I actually just bought this along with a Neutrogena Face one that also contained the Helioplex.  My Rheumatologist also recommended it too! :)
upstater

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 #10 
Have fun on vacation!! :)
Heidirenn

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 #11 
Thank you so much. :)
marilynb

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 #12 
Go to ldn homepage and read about a drug that will help you, and zero side effects. I have a big posting in runningmom's, posting explaining the drug better.
upstater

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 #13 
Hey Heidi.....hoping no news is good news and your labs came back OK!
Heidirenn

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 #14 
Hello, Sorry for the late response.  For some reason this discussion board goes to my junk mail and I need to change that! :) My labs came back VERY good - Nothing indicates systemic lupus. My biopsy still shows discoid lupus, so I have been using steroid ointments prescribed for the two spots on my face.  They are actually diminishing slightly!  What I don't understand is that while in Florida for a week, I wore sunblock consistently and some hats, but still wore shorts and short sleeve shirts (just lots of sunblock). The patches on my face seemed to improve!? Maybe just by chance, who knows. My labs did show that I am Vitamin D deficient so I am on a high dose vitamin D once a week for a few months, and my thyroid was off (I had Graves Disease years back) and it is more on the hypo side now, so an adjustment to my Synthroid.  Thank you for checking in...I wish there was a way to share all of my labs as they did SO many, and surprisingly almost everything came back in the normal ranges except for the two issues mentioned above. I will have to keep watching and be vigilant on the sunblock for the discoid lupus, although I still question if this is what is really going, or if something could be mimicking as I do not feel sick in the sun, if anything I feel better. Thank you. :)
Cakelady

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 #15 
Hi if your biopsy came back discoid then I believe it's discoid but to be super sure maybe have them do another biopsy. For me it's not just the sun that makes me sick but the heat. I end up throwing up a lot. I usually take a pillow in the bathroom. But just because you don't feel bad the sun can be doing damage to your organs. I would be very careful.

at first it is hard to get in the habit of wearing sun screen and hats etc but after awhile it becomes second nature.

I am glad you enjoyed your trip to Disney. We are big Disney fans but we have a strict schedule that we follow when we go or when we go on vacation period.

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