Does the severity of Lupus change?

I am aware of the fact that lupus patients experience flares from time to time. I was not aware that it correlates to how active your disease is at the time of lab testing. My doctor wrote me a message following my visit with him this past Friday when he drew blood/urine:

"Your disease is active because you have low C3, low white blood count (MILD), fatigue and joint pain. Those are the indicators that your disease is minimally active. The only treatment I indicate at this point is Plaquenil. I am not concerned about your low blood count because that rarely would cause any symptoms (sometimes when it is too low you can have more infections and in that case I would treat with Prednisone). I am just keeping a close eye on your labs and symptoms. Overall I would say you have a MILD disease without kidney, brain, lungs or heart involvement. Your dsDNA will probably stay positive for the rest of your life and it does NOT necessarily mean your disease is active."

With this said, I am feeling at my worst right now and am surprised at the MILD results. This leads me to ask, How do I really know when I'm having a flare? And will I always have a MILD case of Lupus?

Very well written Much of the treatment for lupus is learning to cope and have a full life in spite of the symptoms- medications are often not the answer as there is no cure and the medications can be as damaging as the illness.

Hi Jennifer,

Your mild case of Lupus won't always be the same with regular bloods took results could be stronger one time than another but because you have Lupus even though it's mild you will still get flares but to how often they hit you depends on your Lupus and daily life in general.

You'll know when you have a flare if your skin kicks off concerning a rash etc and last 2days or more and that goes for severe joint pain or organ pain.

If you feel active in yourself now while it's MILD enjoy your life best possible incase it changes.

Love Terri xxx

SO helpful....thank you!

Ann A. said:

Dear Jennifer for Healing.

Physicians generally consider lupus to be "severe" when it is life-threatening. This often means severe damage to organs that must function in order for life to continue - kidneys, heart, lungs, brain, etc.. Lupus that attacks organs and structures that are not considered "vital" is generally referred to as "mild." Mild does not mean that a person cannot be extremely fatigued and in great deal of pain. For the physician it simply means that while the person may feel terrible and be miserable, they will most likely continue to live.

This link will take you to a short - one page - article that discusses how lupus progresses over time. The basic answer that it gives to your second question is that yes, the severity of lupus can change over time.

"It is difficult to predict how lupus will progress in any individual patient. Some people will have more serious disease early and then the disease will get quiet, while others will have a mild form of lupus early that gets worse over time," says Jennifer Anolik, MD, PhD, a rheumatologist and lupus expert at the University of Rochester Medical Center in Rochester, N.Y.

When your lupus is "mild" there MAY be times when you feel no symptoms (or only minor symptoms that do not interfere with your daily activities),

When symptoms appear, it's called a "flare." These signs may come and go. You may have swelling and rashes one week and no symptoms at all the next. You may find that your symptoms flare after you've been out in the sun or after a hard day at work.

Over time it is possible to recognize that a flare is coming and to take steps to cope with it. This page provides some information on recognizing that a flare is coming and on coping with them.

Sometimes it is also possible to learn what kinds of things trigger flares and to thereby avoid them.

It sounds as if you are in a flare right now (your disease is active and your feel terrible). I hope that this flare ends so that you can have some good days. Good days are required in order to learn when a flare is coming. When your physician says that your disease is "mild" she is not saying that you do not feel terrible. It is not mild from your perspective or in terms of how your feel. It means that from her perspective your life is not currently being threatened by the disease. From her perspective it means that she does not need to admit you to a hospital. From her perspective it means that she does not have to pull out the heavy artillery in terms of medications: those medications that save lives from lupus but wreck their own kind of havoc on your health.

I am so sorry that you do not feel well. I am glad that your condition is currently not life threatening. I hope that this flare subsides soon. I hope that you learn how to predict future flares so that you can cope with them. I hope that you can learn to identify triggers so that you can avoid some flares. I hope that your lupus does not progress from mild to severe. I hope they find a cure in your life time.


It is different for everyone! Ann's links are very helpful in saying just that. You could potentially have this one incident and never experience it to where you notice it ever again. You could maybe flare once every 10 years.

In other words, I want to look at the positive side of your options. I think it is rare to be debilitated by it. I could be wrong about that. Lots of people work and raise a family and have only periodic trouble.

Keep in contact with us and with your doc!

Hugs to you and I hope you feel better very soon!


Hi Jennifer,

How you feeling in your health?...since you added your thread.

Thinking of you dearly Terri xxx