Question:
Hi, I will try to make this as Short as I can,I am 31 years old, My Mother has Discoid lupus, she has had ot for 30 years. For years I have laid in the sun every summer. Last summer I developed a rash which didn’t seem to want to go away. (It was only on my chest) After 2 months I couldn’t take the itching anymore so I went to the doctor who thought it was sun poisoning, Of course we did a biopsy just in cause Because of my mother. Well Guess what it came back and said? That’s right LUPUS… Of course It was simply discoid lupus so although I was upset, it was something I could deal with in time…. I stayed out of the sun and Used the cream given to me and the rash went away. In the meantime I had an ANA done just to make sure it wasn’t in my blood, Well My Level came back 1:40… which I am told is negative. Now 11 months later I went to the doctor just for routine exam and lab work, and had another ANA done, Also SSA and Many other Double stranded tests done, Well Bad News Came back…. My ANA level is now 1:80 which Now I have been diagnosed with SLE. Oh by the way A new skin biopsy reveals I don’t have discoid lupus. I have some other kind Cortanius I believe they call it. Now I am Set to see a Blood Specialist and I am so lost, SCARED and confused, I still cannot believe this is happening to me, and yet I am not sure of what all this involves. I don’t have any idea what to ask this doctor except if I am going to live or die from this. The only real symptom I am having is tightness in my neck, headaches, and I am really tired all the time. Can someone Please help me in what to ask the doctor…What other tests to have done…. What is the BEST medicine to be on to help someone with SLE…. I have 4 children who I want to see grow up, and I want to be able to take care of them. Thank You, Kandie
Response:
First the best news, by far the greatest likelihood is that you’ll see your children AND grandchildren grow up. 90% of people with lupus live normal lifespans. Regarding that biopsy, it sounds like you were told the results were diagnostic for subacute cutaneous lupus. That’s a skin condition that’s (according to Dr. Daniel Wallace’s The Lupus Book) thought by some to be a bridge between discoid and systemic lupus. You must have had some other antibody studies other than ANA come back positive to get the systemic lupus diagnosis. An ANA of 1:80 would certainly not be enough to base such a diagnosis on. That’s only barely positive. If your lupus is fairly mild (it sounds that way from your description) perhaps you’ll simply be put on Plaquenil. That’s what my daughter and a number of others I know were initially started on. That’s one of the milder lupus medications. You can read about it at the Lupus Foundation website. Here’s some websites for you to start getting some more information. There are lots more, but I hate to bog you down with too many at the outset. These are great ones to start with. Medication Information http://pharminfo.com/pin_hp.html (Be sure to check out their drug database for individual drug information.) Lab Tests Explained http://www.mtio.com/lupus/lfalt1.htm The Lupus Foundation http://internet-plaza.net/lupus/ Lupus Around the World http://www.mtio.com/lupus (This is a great website, but I have to warn you that the Ask a Doc section of it is down indefinitely.) Sandra
Response:
Kandie, The stress of knowing something is wrong, not knowing how to deal with it, and not knowing how it will affect us is enormous. There is a lot of fear in your message. Please educate yourself with good information such as Dr. Wallace’s book called "The Lupus Book." It will provide answers to all your questions and remove most of the fear. I always suggest that you spend some time each week writing notes to bring to the doctor on the next visit. (More often is better) List EVERY symptom and question. Put your "must know" questions first. Be patient. At your age you will probably live at least another 50 years, a normal lifespan. Be good to yourself. When tired rest. Avoid the sun. Take the medication prescribed. Be prepared for all doctors appts. Avoid stress. Don’t pusyourself too hard. Have faith. I wish you the best and will also provide another list of good info sites. http://www.bitech.com/cfar/wolf5.htm http://lupus.miningco.com/mpchat.htm?PID=2750&COB=home http://www.mtio.com/mclfa/lfachat.htm http://www.hamline.edu/lupus/arch9801s/0076.html http://members.aol.com/mycircle/index.htm http://www.ivillage.com/chat/fullschedule/0,2114,E,00.html http://dune.srhs.k12.nj.us/www/lists.htm http://www.oup.co.uk/jnls/list/brheum/hdb/Volume_35/Issue_07/350625.s… s.html http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_277/no_4/l… http://www.healinglight.com/autoimmune/CherrylStory.htm http://www.lupus.org/lupus/lupusfaq.html http://internet-plaza.net/lupus/lupusfaq.html#9 http://internet-plaza.net/lupus/forum/forum.html http://www.lupus.org/lupus/topics/hottopics.html http://www.lupus.org/lupus/index.html http://www.nih.gov/news/pr/feb97/niams-19.htm http://www.hamline.edu/lupus/index.html http://www.ghg.net/schwerpt/luplink.htm http://www.mtio.com/lupus/seclin.htm http://www.lupus.org/lupus/forum/medications.html http://www.silcom.com/~sblc/ http://www.studyweb.com/med/lupus.htm http://www.noalive.com/metro/1999/010499/tmp010499j.html http://www.infotech.demon.co.uk/lupus.html http://www.lupus.org/lupus/lupusfaq.html http://internet-plaza.net/lupus/lupusfaq.html#9 http://www.silcom.com/~sblc/ Prayerfully, Terri
Response:
Started out with Discoid Lupus, "graduated" to SLE many years later. You’ll be fine. I am on Prednisone doing great 30 years after being diagnosed. Will be happy to help you out with any questions. Been through it all Sysse – Hide quoted text — Show quoted text -Kandie wrote in message <928355050.084…@news.remarQ.com>… >Hi, >I will try to make this as Short as I can,I am 31 years old, My Mother has >Discoid lupus, she has had ot for 30 years. For years I have laid in the sun >every summer. Last summer I developed a rash which didn’t seem to want to go >away. (It was only on my chest) After 2 months I couldn’t take the itching >anymore so I went to the doctor who thought it was sun poisoning, Of course >we did a biopsy just in cause Because of my mother. Well Guess what it came >back and said? That’s right LUPUS… Of course It was simply discoid lupus >so although I was upset, it was something I could deal with in time…. I >stayed out of the sun and Used the cream given to me and the rash went away. >In the meantime I had an ANA done just to make sure it wasn’t in my blood, >Well My Level came back 1:40… which I am told is negative. Now 11 months >later I went to the doctor just for routine exam and lab work, and had >another ANA done, Also SSA and Many other Double stranded tests done, Well >Bad News Came back…. My ANA level is now 1:80 which Now I have been >diagnosed with SLE. Oh by the way A new skin biopsy reveals I don’t have >discoid lupus. I have some other kind Cortanius I believe they call it. Now >I am Set to see a Blood Specialist and I am so lost, SCARED and confused, I >still cannot believe this is happening to me, and yet I am not sure of what >all this involves. I don’t have any idea what to ask this doctor except if I >am going to live or die from this. The only real symptom I am having is >tightness in my neck, headaches, and I am really tired all the time. Can >someone Please help me in what to ask the doctor…What other tests to have >done…. What is the BEST medicine to be on to help someone with SLE…. I >have 4 children who I want to see grow up, and I want to be able to take >care of them. >Thank You, >Kandie
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