May is Lupus Awareness Month

Lupus… It’s not something that just “goes” away. There isn’t a cure.

For lupus nephritis (when kidneys are attacked by lupus), patients often do steroids and chemotherapy. However, once you’re done with chemo, that doesn’t mean you’re in “remission.” You then are put on new drugs to continue to manage the kidneys and often times you’ll still be on steroids. There are 6 classes of lupus nephritis. I’m in class 4.

There’s only a small percentage of people with lupus who ever go into remission and that doesn’t always mean it’ll stay like that. Treatments just help manage it. I finished chemotherapy, and now I’m on many different medications including steroids. These medicines are our life-line.

People with chronic illnesses often have a weakened immune system their whole life. If I get the flu or a fever, I have to contact my Dr immediately and they would tell me to go to the ER, where I then get hospitalized & they run cultures. Any type of infection can be deadly for the immune compromised.

Lupus is more common in women & more common during the childbearing years. There are numerous symptoms of lupus & lupus nephritis, and it is different for everyone.

My symptoms have included extreme fatigue, muscle aches, cramping, back aches, migraines, joint swelling, joint aches, stiff necks, fevers, dizziness, lightheadedness, nausea, protein & blood in urine, passing out, & from dehydration: an episode of temporary paralysis for 24 hours.

As I have received treatment, I now only have extreme fatigue, nausea, back aches, cramping, migraines, protein & blood in urine, and occasional joint pain.

Many symptoms can also be side effects from medicines.

Weather, physical or emotional stress etc. can cause lupus flares. Each day is different with lupus. One day you can be perfectly normal just for the next day to feel terrible. It is very unpredictable.

Lupus is a wild ride but I’m SO grateful for my Drs & modern medicine!