My Lupus Story
by Nancy Le
My name is Nancy and I am 33 years old. Like many with lupus it was not an easy diagnosis. My initial symptoms included joint pain and fatigue which my doctors accredited to my lifestyle of competitive dancing. Then I had hair loss, extreme mouth sores and a red scaly skin rash on my hands, feet and face and finally after months of bloodwork and seeing countless specialists I was finally diagnosed with lupus at 15 years old. Like a flip of a switch, my life had changed completely. I wasn’t allowed to dance anymore, I was prescribed a concoction of medication, herbal supplements and cortisone creams, I lost so much hair that I had to wear a wig and I was taken out of school due to my extreme fatigue. Further testing showed the lupus affecting the function of my kidneys and I was sent for my first kidney biopsy. It took well over a year to get the disease into a managed state with the right amount of prednisone and plaquenil at which point I was allowed to go back to school and had to adjust to my new life.
The next few years my body learned to respond to the medication and the disease remained managed. In early 2005 shortly after getting engaged, I had a serious flare-up in my kidneys which was also accompanied by joint pain and the red scaly rash on my face, arms and chest. The kidney biopsy results were so severe that the only solution to avoid permanent damage to my kidneys and possible kidney failure was cyclophosphamide aka chemotherapy. At 21 years old, it was extremely frightening and I can remember many nights crying myself to sleep because I was so scared. I was naïve and only knew chemotherapy to be used with cancer, did this mean I was dying? After given some time to digest what the situation was and understanding how the treatment would help me, I was put through 12 rounds of cyclophosphamide. And just in time for my wedding in the summer of 2006, my kidneys were doing better, the skin rash had subsided but left some scarring and I no longer had any joint pain. Considering where I was a year prior, I felt and looked the best I possible could.
I was prescribed cellcept post treatment and was responding well, the disease was once again being managed. Family planning was important to my husband and I, so my doctors came up with a plan to slowly switch me from cellcept to imuran so we could proceed with starting a family in June 2o08. Unfortunately, my body did not respond well and it went into a flare and proceeded to get worse over several months despite efforts to put me back on cellcept and higher doses of prednisone. I remember the skin rash being so red and raw all over my face, arms, chest and back that I had to wear bandages because some areas would often start to bleed if not covered. Finding ways to cover the rash was challenging and even a simple shower stung so badly at times. My eyesight also was affected and I was taken off plaquenil, unfortunately the side effects were permanent and I now have difficulties with my vision. Family planning was put on an indefinite halt until the lupus could be put back into a managed state which at this point because I wasn’t responding to any other medication, more rounds of cyclophosphamide was prescribed.
I was referred to the fertility clinic to discuss freezing my eggs because my doctor knew family planning was extremely important to me and the amount of cyclophosphamide (which adversely affects my egg supply) I would need was undetermined. It took 5 years of kidney biopsies, several rounds of cyclophosphamide and trying different medications for my disease to get back into a state of “remission”. At one point, some of my doctors suggested that we should look into alternative ways to have a family which devastated me, for as long as I can remember I wanted to bear and have my own children, I had no idea lupus could possible take this away from me.
When I was finally well enough to discuss family planning again, my nephrologist wanted to try a new medication called rituximab that was considered “safer” in pregnancy. We didn’t want to go down the same path again with imuran and have another 5-year setback so we approached the transition plan very cautiously. My body responded well to rituximab and I was given the go ahead to start our family. I was given all the precautions of lupus in pregnancy and we reviewed all the risks and dangers that could arise to me and my baby during pregnancy. We decided since my disease was in remission and I had the best possible care with my team of doctors we would go ahead and try. In December 2013, we welcomed the most perfect baby girl and she has brought more happiness to us than we could ever imagine. My lupus has been in remission since pregnancy and has been that way for two years now. I really couldn’t have asked for more since my dream of becoming a mother had come true and I was in remission.
I recently took my wellness for granted and have been dealing with a nagging cough for over 9 months that would not go away despite trying several different medications. It was really starting to affect my quality of life and becoming really exhausting. It was not until my 3rd chest x-ray where areas of concern in my lungs were presented which further resulted in me going for an emergency CT scan and a bronchoscopy. The results of the bronchoscopy showed no firm explanation for my cough other than it being a cold virus which was extremely frustrating since a cold virus can’t really be treated though it is better than having lupus in my lungs which was what was initially thought. The doctor explained that the medication I was on to keep my lupus managed had made me so immuno-suppressed I had no B-cells or antibodies to fight anything. Basically someone with a cold could simply breath on me and if I were to catch the germs, my body is not equipped with anything to fight it off. I was prescribed some antibiotics to clear out any bacteria in my lungs and help it from spreading any further but my body would have to try to recover on its own while waiting for my B-cells to regenerate.
This episode had me really think and remind me of what it is like to live with an auto-immune disease. Explaining to others what it truly being auto-immune is also important, it’s not as easy as taking more or different medicine or getting more sleep or eating more vegetables. One is never 100%, my best possible self is probably about 80%. The physical, mental and emotional stress of coping with an auto-immune disease is challenging everyday, there are good days and there are bad days. I need to remember to take care of myself, my body is at constant battle with itself whether I feel it or not. A positive attitude and surrounding myself with loved ones gets me through, I don’t want to let lupus define who I am, it is merely just a part of me.