Lupus Nephritis

May 12, 2010 at 3:43 am (Lupus, Uncategorized) (, , , , , , , , , )

Five years ago, I was a young mother finishing my teaching credential when I developed debilitating joint pain. My mom suffered from serious autoimmune illness all my life, so I figured it was something along those lines. I did some research and figured that I probably had rheumatoid arthritis. I went to my family doctor and he ran some blood tests. I came back positive for ANA – antinuclear antibodies – which usually indicates lupus. I went to see a rheumatologist, and even though I was negative for the rheumatoid factor (some people with RA are), he diagnosed rheumatoid arthritis. He prescribed Plaquenil (an anti-malarial), assuring me it was safe, and sent me on my way. I did well with the Plaquenil for a couple of years, but my joint pain gradually came back.

Over the last couple of years I started suffering from low-grade fevers and swollen glands in addition to my joint pain. I was taking large amounts of ibuprofen to compensate for my pain. I was a new teacher at the time and a single mom, and life was pretty hectic. The summer of 2009 was a big one. Within four months, I got laid-off, got married, turned 30, and started law school. At the time of my wedding, I started to notice itchy, red, rashy spots on my neck and ears. My symptoms were steadily getting worse, but I just pushed through. I was eating a terrible diet, high in fat, with too much caffeine, animal products, and alcohol. I had no idea what was going on, though, looking back, I should have.
A couple of months into law school, I was really dragging and I developed a low back ache. I went to my GP thinking it was a urinary tract infection that had gotten to my kidneys. I had protein and red blood cells in my urine, so I was prescribed antibiotics, and sent home. A week later I felt no better. I went back, and when my urine was retested, I had massive amounts of protein. I was sent to a rheumatologist on suspicion of lupus nephritis. When I walked into my rheumatologist’s office, he took about 30 seconds to say, conclusively, that I had lupus and that it was very serious. I guess in one way I am lucky, many people suffer for many years without a diagnosis. I certainly didn’t feel lucky. In that moment, all of my fears came true and I felt as though my entire world came crashing down around me. My blood tests showed anemia (low blood cell counts), inflammation (elevated SED rate), and several types of auto-antibodies, including anti-DNA antibodies, which means my bone marrow was being affected and not producing enough blood cells, I had a high level of inflammation, and my immune system was making antibodies that were attacking my own cells. I was so sick that day, I couldn’t have possibly driven myself to the doctor. The anxiety and depression that accompanied my illness made daily life especially hard. I am very lucky to have a wonderful and supportive husband who was with me through it all.

So my next appointment was with the nephrologist, a kidney specialist. He did not inspire a great deal of confidence. He seemed very uncertain of what was to come, or perhaps unwilling to share. He said that I needed a kidney biopsy. It would be performed in the hospital in a cat scan machine by sticking a big needle into my back. It sounded scary, but it was actually not bad at all. They do the biopsy to determine that the kidney problem is indeed caused by lupus, and to what degree it is affecting the organ. Turns out I had class III glomerulonephritis, but the doctors said that while there was lots of inflammation, there didn’t appear to be any damage at that point. So they put me on a high dose of prednisone, 60 mg, and an immunosupressant drug used for organ transplant patients called Cellcept.

The few months after my diagnosis were the worse. I had serious anxiety, which I had never experienced before, and some nights I would go to bed weeping, convinced I would die in my sleep. High dose prednisone is a miserable experience. While my rashes and joint paint went away, I would wake up at 3 am wide awake, unable to go back to sleep and I was very edgy. I bruised very easily and had an extremely dry mouth. I drank water all the time and had to pee constantly. My cheeks were red and I broke out all over my face. I started to grow hair where I never had any before, mostly on my cheeks. Prednisone certainly causes a myriad of side effects, but the worst is undoubtedly the moon face. My face blew up to a very unattractive size and I was embarrassed to go out in public. Seeing myself in pictures was torture!

The cellcept was started at a dose of 1500 mg a day, gradually increased to 3 g per day over the next few months. I tolerated it well, but was always daunted by the lengthy list of possible side effects, which include cancer among many other serious conditions. I was fortunate that I wasn’t faced with taking cytoxan, a chemotherapeutic agent, that is commonly used for lupus nephritis, because of this new drug. Cytoxan causes cancer and infertility, and having just gotten married, I was very much hoping to have another baby.

So over the next couple of months, the doc gradually reduced the prednisone, and increased the cellcept. I felt ok, had an unnatural amount of energy because of the prednisone, but at times I was crippled by the anxiety and depression that was probably induced by both the illness and the meds, in combination with the bleak outlook for this disease. My rheumatologist is great guy, who is highly respected and has been working in this specialty for several decades. He advised that my husband and I read “The Lupus Book” by Daniel Wallace. I did, cover and cover, and while I think information is extremely valuable, I now think that reading THAT book at THAT time was a mistake. It was easily the most depressing read I’ve ever read. It went through, chapter by chapter, all of the possible complications of lupus, with WAY too many statistics, the most notable of which was that 50% of lupus nephritis patients end up on dialysis within 10 years!!! Yikes. Needless to say, that did not help my anxiety and depression.

Fortunately, that was not the only book I read. I also picked up “The Lupus Recovery Diet”, by Jill Harrington. Jill was diagnosed with lupus more than 12 years ago, and she was disheartened as I was by the prospect of suppressing symptoms with toxic drugs, never addressing the cause of the illness. She educated herself on the importance of diet and made some dramatic changes, becoming a vegetarian. She improved, but she realized that she had to do more, and she discovered True North, a fasting and nutritional therapy center in Santa Rosa, California. She did a 7 day fast followed by an immaculate diet, and she has been lupus free for 12 years. It took me 6 months of reading and research to come to the conclusion that I needed to try this also. I became a vegan as soon as I read Jill’s book, figuring that even if I didn’t help with the lupus, it would help prevent weight gain and a lot of other serious side effects of the medications. So I planned a trip to visit True North in May of 2010.

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