1) I think it is a genetic defect.
2)Mine started in Nov.1999.Why? Only God knows.My cardiologist thinks that the first clot was triggered by my MVP and irregular heart beat,then they just went crazy.
3)lupus is an auto-immune desease, your body's immune system can no longer tell your body from a foreign matter so it attacks it's self. It is a chronic life long illness that will eventually kill you.
4)Each case is different some more sever than others, mine is mild. As in #3 it will last the rest of my life.
5) As there is no cure the symptoms are treated. In my case I take coumadin for the anti-phospholipid syndrom caused by the lupus,a fluid pill for the water retention caused by the inflammation caused by the lupus, a pill for blood pressure again that is up due to the lupus.
5) The most important result from treatment is relief from the symptoms, or in my case getting the BP down under stroke range, relief from the pain in my joints caused from swelling from water retention caused by lupus. And the most important NO MORE clots in my lungs and heart...they were NOT fun!
6) The chief problem is this desease has stolen my life. I cannot do the things I used to, I cannot do anything with out stopping to think of the cost in energy and pain.I cannot live a day with out eating pills to keep me alive.
7) CNS damage, a stroke that leaves me a drooling idiot, becoming an ivalid that is a drain on my family.Having to be on dialysis because lupus ate my kidneys up,major oragn damage.
Living with lupus takes courage because we KNOW that everyday will have it's own challenge. Will I be able to get out of bed can I get the house work done? Just how much pain will I have today? Will I get some new problem to go with the ones I already have?
You learn to fear new pains---- is that flank pain just the muscle or have my kidneys gone to hell? Is that dizzy spell just the same old crap or do I now have CNS to deal with?
BUT the one thing this desease teaches you is to NEVR take a good day for granted, you learn to cherish the days you can pick up the grandbaby or to just simply walk with no pain.You learn to value your friends because without them you would go nuts. You learn that your partner IS the best thing that ever came into your life because they are with you even when it gets really hard..........Deb

Debrorah that was awsome! I have to ask you about #7. I have bad right side pain and I am afraid that my kidneys are affected as well as my CNS because I have had constant dizziness since Oct and my docs just send me to ENT docs and Neuro docs that can't find any reason for my dizziness. Did you have any kidney symptoms and how does it affect your CNS?

1. I think it was genetic.
2. I think my immune system was compromised since birth. I was a low-birth weight baby (only 4 lb), and my mother never nursed me so I didn't get the immune system builders from mother's milk.
3. I have been diagnosed since 1990. However, I was symptomatic since childhood.
I typically experience bouts of mild joint and muscle pain, fatigue and hair loss.
4. The most severe flare that I had experienced was in 2004 when the lupus affected my CNS. I still suffer neurological and mental residual effects from this particular flare.
5. I am very happy with my current treatment regimen (see profile).
6. Anemia and CNS involvement.
7. That it has the potential of affecting my CNS again. CNS-related involvement of lupus is the worst-case scenario for a lupus patient.

Hi. I was diagnosed in 1999 with SLE after many years of seeing doctors and told I was just depressed. It often takes many years for someone to be dx. I had joint pain and fatigue. I was, for sure ,dx with RA when I was 27. I was tested for Lupus, but my ANA was always borderline until 1999. To answer your direct questions, I will try:
1). There is no known cause for SLE. Some think it is environmental, some think hereditary (I have 2 sisters with SLE). Some say excessive stress causes it.
2).I think mine started because of constant stress and hereditary factors. I was a working LPN for 17 years in Nursing homes and I worked for Hospice. I was under constant never ending stress. (sorry hon, nursing is tough occupation.)
3)The sickness is life- long for most. Some have it from a young age and some are not dx until years later. I think I had it as a child. Some don't see symptoms until they become pregnant or try to. Some go into remission when pregnant. Some go into remission after menopause. Every case is different. Some people have joint pain and fatigue, some have blood clotting issues. For some it attacks the CNS. There are other systems it attacks.
4)#3 kinda addresses the 'how long' question. The severeness varies by person. The similar symptoms that I think every Lupus person suffers from is pain an d fatigue. It is relentless and never-ending. I never know what my day will be like until I wake up. I know then if the pain is going to keep me down for the day or if it will be down enough to clean the house or go grocery shopping. It is pain that doesn't go away despite handfuls of pills. Prednisone seems to help me the most, however since going on it in 2001, I have gained 70 lbs, loss most of my bone (Dexa scan revealed "significant bone loss in just 2 years),and have Glaucoma. I couldn't work any more after 2004. The fatigue and pain were overwhelming and I was struggling to keep working. My kidneys failed and I was hospitalized. Now, I am disabled, and have no clue if I will ever go into remission. All I can do is hope for a cure.Stem Cell transplants are showing promising results! Northwestern University is conducting these studies right now.You could check there Rheumatology website for info.
5) Treatments vary for each person. For me pain control is #1. Morphine and Prednisone allow me to get OOB every day. I would opt for a Stem Cell transplant if it were available. I have hope in that, because right now there is no cure. Only treatments that most of the time don't work.
6)For me the biggest problem is not being able to work. Lupus affects mainly women between the ages of 20 and 40. Right when we are trying to have careers and families. The obstacles are monumental. It is very difficult to take care of others when you feel like you can't even take care of yourself. Another problem is the lack of doctors and health care professionals who understand the disease and know how to treat it. Most Lupus sufferers are perfectly normal looking despite the pain they are in. Hence the many years it takes for diagnosis. Doctors just don't understand how much we are suffering because our labs will be normal despite the agony we are in. Sed rates sometimes indicate bad flares, but it is the ever day pain and fatigue that is disabling.
7) My biggest fear is death. There is no cure. When my kidneys act up, I am fearful of having to go on dialysis. When I get lung infections, I am fearful of dying of pneumonia, When I take my 15 pills everyday, I am fearful that one day , none of them will take the pain away. I am on high dose Morphine and it needs increase often. I am fearful of having no pain med that will work. I am 42 years old.
I hope this helps. There are great websites out there. The Lupus Foundation of America is one. Please try to educate your classmates about Lupus. As I said health care professionals need to know that even though we look ok, we are suffering unimaginably. Have compassion for those already diagnosed and if you have a patient who is c/o extreme fatigue and joint pain without physical symptoms (swollen joint, red joints, normal labs) please at least try to direct them to a Rheumatologist or have the ANA test ran. Thank you. Good Luck! :C