So many of you have "been there, done that" with Lupus. I have a question. My Lupus diagnosis is ACLE, and so far I have only skin involvement and nothing else. I've been on Plaquenil for about 5 months now and it has helped the visible symptoms a lot. My night sweats are gone, the redness in my face is drastically reduced. I have flat red spots on my hands, primarily on my knuckles that, according to my dermatologist, is a classic symptom. I use Clobetasol for that and it helps. I have very itchy scalp most of the time, and I use Neutrogena Clearface sunscreen every day to help with the UV sensitivity. I try to educate myself as far as trying to notice new symptoms, and so-far-so-good, have noticed nothing else. From what I've read, there is only a 3% to 10% chance of ACLE developing into SLE. Is this accurate? I want to hear from those of you that have had a similar issue. Sometimes what is reported is different than real-world experience. I'm a guy in my early 40's and am starting to get some general aches and pains that I've chalked up to middle age, but nothing severe or anywhere near debilitating. I'm not one to worry about much. God knows my future and I'll handle anything he throws my way, but I think educating myself is a smart thing to do.
yes that is true. There is the greatest possibility that it will stay only cutaneous (skin) lupus and not go systemic. I started with systemic lupus and strangely went into cutaneous 20 years later. But, sounds like your dr is managing you well and you should hopefully remain clear.
Best Wishes to you. I hope your luck holds. I went from Cutaneous treated with Plaquenil with a severe reaction that put me in hospital to S.L.E., but a bit better. Three years later still not under control, Liver was compromised that is now improving with another change of meds from Imuran to now Cell Cept. Be a good patient & research & comply. I wish you all the best. Kaz x
I am in the same boat as you, but I’ve had joint involvement, too. I was diagnosed in February of this year. Plaquenil has done wonders for me. My skin has never looked so good and the hair that I was loosing in clumps is starting to grow back. About 3 months ago, my doctor started me on mobic because I was having constant body aches and that has really helped. I keep a lupus notebook- one part is to track any symptoms, which has been really helpful. Pay attention to your body and ask questions. There is so much info out there- it can be overwhelming. Good luck!
According to a study performed in 2010 by the Department of Dermatology in the University of Pennsylvania School of Medicine entitled Cutaneous Lupus and the CLASI Instrument, and if I read it correctly, it is 72%. You may read further on this at http://www.researchgate.net/publication/41760106_Cutaneous_lupus_and_the_Cutaneous_Lupus_Erythematosus_Disease_Area_and_Severity_Index_instrument
Education is good.
I am one of those rare one's you speak about. I started off with subcutaneous lupus panniculitis in Jan 1999, and was told by my doctor that it was a small chance of going into SLE . In 2002 I finally went into remission for about for about 4 or 5 years. Then it hit me really hard with major skin involvement and I also was showing signs of SLE, an ANA confirmed it. So now 15 years later (in this coming Jan) I have the subcutaneous lupus panniculitis, SLE, osteoarthritis, degenerative disc disease in my lower back and severe fibro. It can happen, just make sure you keep on top of everything and if and when you have changes take notes and report them to you doctor immediately. I wish you all the best!
Hello Joe!, welcome to the fam!!! I have dealt with the things that you are dealing with , and as you know or come to know , Lupus has different ways of Flares for everyone and different ways of flaring ! Needless to say it always end up being the same LUPUS. I have SLE now for 4years in Feb., and the plaquenil , has been part of my life from that time to present and Yes it really does HELP! It seem as though you are aware of your changes that occur , that’s a Good thing. Flares come at times when least expected so stay on guard …Beverly L.
I have the joint pain and everything but the rashes so far … Im sorry to hear about your struggles with this odd but real pain in the a** disease i have SLE but am starting to have kidney involvement, which i think may be turning into Lupus Nephritis ? Idk about how this all works but i do know there are so many different symptoms of this that its hard to tell the difference between what “type” we all all struggle with. Your in my prayers!!