Coping With Lupus
One of my dear friends pointed out to me that although there was a node about Lupus, and one regarding commonly used drugs to treat it, there was no first person account of the disease.
I was diagnosed with Systemic Lupus Erythematosis in 1998, when i was 21 years old. The diagnosis did not come easily as Lupus is not the first, or even tenth thing doctors tested me for. My symptoms were a bit ambivalent as well. They included feeling very tired, achy all over, and very nauseous. I was subsequently tested for eveything from AIDS to Cancer.
When they did find the problem it was then a search to find out just how severe my case was. Lupus can be anything from an inconvenience to a life threatening condition. It often affects different muscle groups as well as the joints. I primarily had difficulties with my stomach and trouble walking. As for the butterfly shaped rash mentioned in the Lupus node, I was lucky and didn't get that. It is actually less common in the form of Lupus I suffer from, but still occurs in many cases.
Once the diagnosis part was taken care of the treatment portion began, slowly. I was first given the drug Plaquenil. I thought ok, easy enough take a pill each day. Not so simple, the Plaquenil made me sick on my stomach and didn't really solve the problem of the joint pain. Eventually my medicine was changed to Aralen, which after a few months worked rather well. I stayed on just the Aralen for the next two years. Around that time I got pregnant.
My first trimester was riddled by the worst nausea I had ever experienced. Besides that i had to go to the doctor every two weeks to be tested for antiphospholipid syndrome, which causes there to be an increased rate of miscarriage. After the four month mark things progressed fairly normally until my sixth month at which time i started spotting and having contractions. I was then hospitalized for the remainder of my pregnancy. I stayed in the hospital for five weeks and then gave birth to my daughter. She was over a month early, but otherwise healthy. She is now a year old and is a very busy girl, you would never know she was premature at all.
I still have regular flare-ups of the disease and recently had a rather bad couple of months. My physician has advised me that one more bad spell like that and I will be put on a more aggressive treatment program which will include the addition of some sort of cytotoxic or immunosuppressive drug. These drugs supress the immune system and are fairly effective at controlling Lupus. The downside of these medications is that they have several side effects. They cause increased risk of infection and low white blood cell count. They also leave the patient at increased risk of certain types of cancer later on in life. So, for now my regimine includes Aralen each day and I give myself the occassional protein shots to combat weakness.
As Lupus patients go my prognosis is fairly average, individuals with Lupus have an 80% chance of living a normal life with women having a 5X higher mortality rate than men. So I live each day, take my meds, and hope for the best.