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Old 08-16-2008, 11:20 AM   #1
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hamptonmeadow HB User
Butterfly rash

Started this butterfly rash (for the first time) a week ago. How long does it last? It is very deep red, swollen, itchy and
shocking to see.

I guess I thought it would go away soon but now I am worried it will always be there.

 
Old 09-04-2008, 07:15 PM   #2
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Re: Butterfly rash

Never mind. Thanks anyway.

 
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Old 09-05-2008, 05:18 AM   #3
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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

hamptonmeadow, sorry for the delay! I just read that a malar rash can last from several days to weeks. (That's not very specific, is it?)

Most sources say they aren't itchy.

Dr. Daniel Wallace cites two rashes that can be mistaken for a malar rash: rosacea & polymorphous light eruption (PMLE); he says a biopsy may be needed to prove that it's really a lupus rash. (FYI, his very helpful hardcover is in most libraries. Dr. Robert Lahita is another very reputable rheumie/author.)

Did a doctor see your rash? Good luck, from Vee

 
Old 09-07-2008, 03:53 PM   #4
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Re: Butterfly rash

Yes, I saw several docs. They did a biopsy which came back "suggestive" of lupus. The blood test was negative.

They are sending me to a rheumatologist. I have to wait and see.
VeeJ, thanks for responding.

I looked up pmle and my rash is only on my face and is only on my cheeks, or in other words a very typical imprint of a malar rash. But my face was very swollen and it did itch and was painful. That part is gone but I still have the "mask".So who knows? )

Last edited by hamptonmeadow; 09-07-2008 at 04:00 PM.

 
Old 09-09-2008, 07:03 PM   #5
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Re: Butterfly rash

Hamptonmeadow, I was thinking of you & hoping you'd post again but was unable to check until tonight. (Had a terrible PC crash, my worst ever!) Anyway, I'm glad you're seeing a rheumie. I had a long, hard time getting clear answers. My dermie labs TOLD my drs. to test for lupus, but my GP's & rheumies either (1) did not, or (2) did, but didn't get positive results back on first try---so I languished. Disgusted & miserable, I finally took myself to a teaching hospital rheumie & got answers VERY quickly, from blood tests & from one final skin biopsy.

...which is my way of saying that sometimes it takes better doctors, more specific tests, the right timing (very important), and for your disease (if it is lupus, that is) to ramp up to a "testworthy level". So here's hoping all those factors line up, so you can get answers. Hang in there, OK, and keep us posted. Thinking of you, and sending my best wishes, Vee

Last edited by VeeJ; 09-09-2008 at 07:10 PM. Reason: spelling

 
Old 09-10-2008, 07:13 AM   #6
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Re: Butterfly rash

Be persistent and don't give up. Nobody knows how you feel but you. If you are sick and you know something is wrong, keep going so you can get the right help. My blood tests at first were negative, too. I knew I had lupus because I had every symptom. I finally ditched my family doctor and went to my dermatologist who ran another ana test with a different lab company - not LabCorp- and my test came back highly positive. I finally got in to see a rheumatologist who refused to use LabCorp as well. I have questioned this, and found out there is no specific regulation in how these ana tests are ran, and therefore there are conflicting results (scary, huh?). So don't give up and get your test results in hand and have the ana ran by a different company.

Maybe that will help in your diagnosis? It was a relief to finally have it for me so I could get help!

 
Old 09-14-2008, 06:35 AM   #7
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Re: Butterfly rash

I suggest you read all you can on internet for lupus; look for pics etc of your rash. I have just started trying to learn all I can because my daughter(35) has the same rash and other symptoms. Seems to be very stress related. Hope to be able to tell you more later.
Quote:
Originally Posted by Lizzy73 View Post
Be persistent and don't give up. Nobody knows how you feel but you. If you are sick and you know something is wrong, keep going so you can get the right help. My blood tests at first were negative, too. I knew I had lupus because I had every symptom. I finally ditched my family doctor and went to my dermatologist who ran another ana test with a different lab company - not LabCorp- and my test came back highly positive. I finally got in to see a rheumatologist who refused to use LabCorp as well. I have questioned this, and found out there is no specific regulation in how these ana tests are ran, and therefore there are conflicting results (scary, huh?). So don't give up and get your test results in hand and have the ana ran by a different company.

Maybe that will help in your diagnosis? It was a relief to finally have it for me so I could get help!

 
Old 09-14-2008, 06:46 AM   #8
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Re: Butterfly rash

My daughter has had the "butterfly" rash for 5 years now with dermo drs not knowing what it is. Sometimes seems they don't care. She is now having other symptoms that goes along with the Discoid Lupus, along with the rash, so I am going to take her to have a ANA blood test and am researching all I can so I can get her better. Chronic Fatigue is a huge symptom. I have read that vitamins C & E and magnesium is good. Lupus seems it can be very stress related so eating anti-stress foods (berries are good example)bananas, kidney beans. new potatoes..leave caffeine out of your diet. These are merely suggestions for possible relief. I am trying them on my daughter. I am open to any info anyone has. Good luck to all with this "mystery" attacking your body.

 
Old 09-14-2008, 08:13 AM   #9
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Re: Butterfly rash

Debbie, hi & welcome. My #1 suggestion to your daughter & you is to look in your local library for hardcovers by two top rheumatologists. One is Dr. Daniel Wallace, and the other is Dr. Robert Lahita.

I had episodic problems from early childhood on, ranging from chronic, lower-level to several very serious episodes. My drs. didn't suspect lupus until I was in my mid-to-late 40's. How I wish that someone had suspected an autoimmune problem MUCH earlier... So I hope she & you keep trying.

What I most needed was better doctors: (1) a teaching hospital doctor knowledgeable enough to immediately suspect a variant presentation (anti-Ro autoantibodies but negative ANA), and (2) a dermatopathologist who did immunofluorescent stain tests as part of his deep-punch biopsy. (Previous dermies did deep-punch biopsies, looked thru microscope, and saw characteristic cell changes---but they had failed to run stain tests that could have confirmed lupus.)

Also, I hope your daughter is being VERY careful about sun exposure. For most of us with lupus, it's a non-no.

I hope you keep posting here. Wishing you good luck & clearer answers, Vee

 
Old 09-15-2008, 06:04 AM   #10
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debbie5508 HB User
Re: Butterfly rash

I want to thank you ladies for your replies to my post. The last couple of days I have been reading and reading and reading..I'm sure all on here has done the same. My daughter normally lives 3 hours from me and I kept hearing how "sick" she was all the time, and became very concerned. She is quite the hard-headed one so it took awhile but she finally wanted mama. When I got her to my home and saw what was going on with her I got busy researching. She had been being treated for psorassis, with no results. I will start this week taking her for tests etc and hopefully will find something out..but I am not going to solely depend on what the Drs say. Thank you for the book suggestions Vee, and thank you Lizzie. Please stay in touch. I believe I will need more support on this, and of course I will be there for you as well. Thank you, Debbie

 
Old 09-19-2008, 04:36 AM   #11
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Re: Butterfly rash

Hey everyone!-My name is Tammy, "the daughter" of Debbie5508. I don't want to discourage anyone but, I have had the rash for over 5 yrs and it has done nothing but worsen. I also have huge (larger than 50 cent pieces) red bald patches, that are extremely painful on my scalp. DO NOT DELAY-SEEK MEDICAL ATTENTION ASAP! It feels as if a torch is being held to my head at times. I have not had any blood work or test performed as of yet but scheduling some, thanks to mom, due to drs continuously telling me that it is psoriasis. Other symtoms i have include chronic fatigue, sore and achy body and i am only 35- also short term memory loss, seizures, skin feels on fire but i feel cold and my toes go numb and turn blue at times-the list goes on-good look to all and may God bless you!!

 
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