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Lupus sle changing from discoid?

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October 8th, 2009
I was diagnosed with Discoid Lupus thru biopsy. I have 4 of the 11 symptoms always present and sometime 5. A new lupus doctor is putting me on antimalaria medicine. My discoid lupus is severe. My ana is negative but he says after looking thru many long term hospitalizations and other past medical history that all my symptoms are Lupus. Since they say discoid lupus only effects the skin and i have internal problems, arthritis, fibro symptoms, discoid rash, rapid heart beat, mitrol valve prolapse, raynauds, severe lung problems, currently undiagnosed...said i have copd but this new doc did a test and said i dont...constantly get pneumonia...etc I may be one of the few without a positive ana. he said he is 100% positive it is all related to my lupus. He is a lupus specialist that i met thru a lupus study that i did not qualify for because of my negative ana. I am just starting treatment with him on Nov 5th. What do any of you think of using antimalaria drugs as the steriods are not helping the discoid rash? Someone please reply...
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fullofanger
replied October 8th, 2009
I hope this helps!
I started out the same way 5 years ago, I had 9 out of the 11 symptoms with a negative ANA. my doctor also a Lupus specialist was 100% sure it was SLE. He put me on antimalaria meds, and steriods. I went into remission after a year of treatment. 2 years ago I had a really bad flare, this time I had a high positive ANA. I had a really bad rash, hair loss, kidney, and heart problems. I also had a stroke. My Lupus changed from discoid to SLE Lupus. I was only 26 at the time. My doctor told me when I was first diagnosed I had subacute discoid Lupus. That ment I had a higher chance of getting SLE. I had to go off the steriods, they were making the rash worse. once I went off the steriods my face started to clear up. I was also on cellcept at the time, I am still on the cellcept and antimalaria meds. I hope this helps, and take care.
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Users who thank fullofanger for this post: chader04 
chader04
replied October 8th, 2009
Thank you for responding...I felt like I was losing my mind at first...not having that positive ana makes it harder...I even had a rhumie tell me I just had discoid and it was all in my head until everything got bad. I too am being taken off the steriods..not sure if its making my rash worse or just not helping..lots of scarring...I guess I won't be afraid of the antimalaria meds...I hope you are better now.
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fullofanger
replied October 9th, 2009
good luck
No need to be afraid of the antimalaria meds. It's the others that scare me. I have been on antimalaria meds for 5 years, I have not had a problem yet. Just remember you need to get your eye's checked. I thought I was losing my mind as well, then all hell broke loose. Sometimes the battle gets bigger than the fight, but that's when you remember to fight harder.
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freedomangel
replied December 29th, 2009
Hi i've just joined here.. I also take antmalaria pills..the steroids were not working..if I have a bad flare then i also take steroids for a while!
I haven't had a bad flare for over 2 years.

Yes you must have your eyes checked often.
Your not alone.
Happy new year to you and all the readers on here!!
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