I am 34 years old and was diagnosed with Systemic Lupus Erythematosis (SLE) in January 1993 at the Mayo Clinic in Jacksonville, Florida at the age of 18. My first symptom was a bit of a rash on my face, but thought it was probably allergies to something. Then about 2 months later I noticed bald spots all over my head. This freaked me out and I knew something was wrong. I then heard about the Mayo Clinic (I was living in Jacksonville as a nanny at the time) and went in for tests. I didn't know what Lupus was at that time. The doctors told me I either had Mono or Lupus. Then my arthritis started and more tests proved that it was Lupus. They immediately started me on Prednisone and Plaquenil. Since then I have been on Methotrexate also.

I moved back home to Utah and started seeing specialists at the University of Utah and LDS Hospital. I was doing pretty well until May 1995. Then I had a little flare which resulted in a yeast infection, or thrush, in my mouth. I was started on penicillin and got a rash all over my body. It threw me into a major flare and I ended up in the hospital for a week on major doses of Corticosteroids. Two months later I started on antibiotics for something else and again broke out. At this time I realized I had an allergy to antibiotics. I immediately got of the medication and was fine.

A year later I was doing rather well and got down to 2.5 mg of Prednisone. Then I started on Keflex for sores in my mouth again and had a reaction. The next day I couldn't wake up and was totally delirious. My husband took my temperature and it was 103 degrees. He called my doctor and took me right in. My blood pressure was 80/50. I was rushed into ICU. They pumped 8 liters of Saline solution into me to raise my blood pressure with no success. Finally, they had to give me a blood transfusion. During the process of filling me with liquid, it seeped into my lungs and I developed ARDS (Adult Respiratory Distress Syndrome). This forced me to be on a respirator. I had got Septicimia (Sepsis) through sores in my toes or ears which had gotten a staff infection. I had some lesions the first time I went into the hospital on my chest and had laser surgery a week before the second trip there to remove them and they got infected also. I was in Intensive Care for a week with a tube down my throat and one down my nose. It was a nightmare. Then I was in general care for another week while they had me on I-V antibiotics, which I developed an allergy to the day before I was to finish them. A week later I broke out in a rash as a delayed reaction to the antibiotics. I recovered rather quickly from this incident and my husband and I moved to California 2 weeks after I got out of the hospital.

Almost a year had gone by and then in May 1998, I woke up with a temperature of 104 degrees and a blood pressure of 70/36. I went to Stanford Medical Center and was treated for Sepsis again, this time caused by E-Coli, which I had got from a prolonged untreated UTI (Urinary Tract Infection). I'm doing much better now.

I still lose my hair, but go in often for shots of Cortisone in my head. I also get sores on my lips, mouth, toes, hands, etc. Depression is normal, but if you let it take you over, it will make it worse. Find things to get your mind off it and things that will help you and others cope with your disease.

When I was first diagnosed, they tested me for the Antiphospholipid Antibody Coagulant and I tested negative. This can cause miscarriages in pregnant women or strokes or other problems in patients with SLE. It is possible to have this antibody without having Lupus and it can change from negative to positive or the other way. I now test positive for this antibody. The way they help treat it in pregnant women is with baby aspirin daily and heparin. This antibody causes the blood vessels to constrict and stick together and in turn causes a blood clot to form. These treatments help to expand the vessels and keep them from constricting as much, minimizing the chance of a blood clot.

I was closely followed by Dr. Maurice Druzin, a high-risk Obstetrician at Stanford University through my pregnancy. Because of the Antiphosholipid Antibody, I took baby aspirin daily and gave myself shots of Heparin twice a day. I also have another antibody called SSA+ (Schogrins) which can cause heart block in the baby. They figure if they catch this problem in the fetus between 16 and 22 weeks, they can treat it with steroids. In order to catch it, they must do a Fetal Echo, much like an ultrasound, as often as they feel is needed.

After my first trimester of pregnancy until about June 2000, I had no symptoms. It was wonderful. Maybe I should be pregnant all the time. I had a beautiful daughter, Shayla, in July 1999 at 37 weeks. We are now living in Houston, TX. I've had a hard past year, living a lot on pain pills. So my doctor, Dr. Sandra Sessoms, gave me a couple shots of Depo Medrol, a potent steroid. It took it about a week to kick in, but since then, I've felt great. I've lowered my Prednisone and started working out at the gym with mostly no problem.

Lupus patients have a much higher chance of getting infections than other people. We must be very aware of germs or illnesses. Unfortunately, those at work or other places we go don't have a reason to think about that and thus don't protect coughs or colds, etc.

My sister was diagnosed with Lupus in December 1999. She had problems with kidney disease right from the beginning, but has since got it under control.

I was blessed to not have kidney involvement until 2002. In January, 2003, I had a kidney biopsy because of protein in my urine. The results showed two types of kidney disease (type 3b and type 5) specific to Lupus. The only choice of treatment was Cytoxan (Chemotherapy). I started that in February, 2003 and then it quit working for me in about October. So I switched to a drug that's a little unknown, so not used too much yet, called CellCept. That seems to have helped. I got off the Cellcept in August 2004 to try to get pregnant.

I got pregnant again in March 2005 and, for the most part, other than some joint pain, my lupus did great.  I did have a good Dr., Dr. Brian Kirshon, who knew about Lupus.  I got off the Plaquenil for the first trimester and raised my prednisone up a little.  But the second trimester I started back on the Plaquenil and lowered my prednisone back down.  I think the plaquenil really helped out.  Our beautiful baby, Kyra, was born in November 2005 at 36 1/2 weeks.  I only had a little flare the end of the pregnancy.  This time through the pregnancy, instead of fetal echoes and stress tests to check for heart block and placenta problems, I just had a ton of ultrasounds.  The baby kept turning breech every other week and I was worried I'd have to have a c-section.  Luckily, because of my susceptibility to Sepsis, I didn't have to have one.  I then had a constant breast infection for about a month, due to not being able to breast feed her.  So I was on a lot of Keflex.  One night I was on my way to Sepsis...I could feel it coming on and my temp was rising.  But I started on another round of Keflex that night and then went into the ER the next day for a one time dose of IV antibiotics, which seemed to catch it.  My dr. started me back on the Cellcept to continue to lower my protein level in my urine. 

I've been on Coumadin since Kyra was born and get my PT (blood clotting time) checked every 2-4 weeks. Lately I've been feeling generally good, other than joint pain here and there. 

I hope to soon be making a website dedicated to Lupus to help others with the disease or those who want to know more about it. Please check back for more details.
 

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