SLE and me
Systemic lupus erythematosus (SLE) is not easy to define. To many medical students, it is probably seen as one of those rare, small print syndromes, which are quite unlikely to come up in exams. Some would associate it with the typical butterfly rash and may know that it involves the joints.
Anyone who knows more than that as an undergraduate is either extremely keen, or, like me, personally affected.
It all started with the itching. It seemed to be all over and it just got worse. I had just got back from South Africa and it was not long before I had literally scratched off my tan. I would just lie in a cold bath until I went numb. But I left it a few days before I went to my GP. I thought that it would just get better.
When I finally sat myself before the GP I was in a state. I had got hold of some antihistamines which took the edge off the itching, but they made me drowsy. The GP took the standard liver function tests, asked me about my alcohol intake and activities in Africa, and sent me away with enough chlorphenamine maleate to knock me out for a week.
The next day I got a phone call asking me to present at the infectious disease unit because it seemed that my liver function tests were “somewhat elevated.”
After a week of sampling every bodily fluid, and further queries about my alcohol intake and activities in Africa, it was decided that it was my liver and I was not infectious. I was still itching and my joints seemed to be feeling a bit stiff and tender.
Over the next week or so I developed a chickenpoxlike rash on my face and chest. My joint pains got significantly worse. I ached all over. It basically hurt to do anything and, before long, I was doing nothing. I hobbled to the GP every other day (when I could) and was sent to see the rheumatologist.
The registrar on call was sure that it was fibromyalgia, and a small dose of steroids would sort me out. I knew the list of side effects and I didn't fancy them. But I was getting desperate and would have tried anything. By now the rheumatologists were working on the lines that there was a possibility that it might be SLE. By this stage I needed help walking and dressing.
Arthritis really can tear your life apart.
Mobility is so important and I do not think that I appreciated it until I lost it. And pain. I have heard patients describe their chronic pain so many times, but the actuality of constant pain is not something I can put into words. My life changed completely. I am no exercise freak, but I used to enjoy swimming.
Now I could not leave my flat because I could not manage stairs. I could not even fill the kettle.
started on a huge dose of steroids and I felt better within days. I was tested for antinuclear antibodies and double stranded DNA, both markers for SLE, and they were positive. In a sense this was a relief. I wasn't chuffed at having the syndrome, but I was hopeful. I was prescribed malaria tablets that are supposed to help with joint and skin symptoms.
Staying in hospital is no mean feat. Me, a patient? It just felt wrong. The days just drift into one long routine of ward rounds, medication rounds, observation rounds, paper rounds, all punctuated at hourly intervals with a never ending supply of tea. I have never drunk so much tea in my life.
And then there were the other patients. I was on an open ward with more “mature” women who, as nightfall approached, succumbed to a state of delirium. Sleep was an impossibility. At one stage one of them developed the deluded notion that I had stolen her bandages, and she advanced towards me waving her stick. Bed bound as I was, I managed to get out the way just in time.
Then came the methotrexate therapy.
This is a nasty drug. It may be a recognised treatment for joint conditions, but it was originally used as chemotherapy for cancer patients. The side effects are unpleasant.
Hair loss, excruciating mouth ulcers, nausea, vomiting, diarrhoea. Add this to the side effects from prednisolone—namely, even more hair loss, acne, abdominal weight gain, striae, easy bruising, mood swings, and depression.
Eventually I left hospital, and in a state of drug induced madness I attempted to sit the fourth year exams. Still on the methotrexate, I was far from being the person I had been, but I could get up in the morning and that was a bonus. But then on results day I was dealt a devastating blow.
I had had a nagging pain in my right leg for a few weeks which was getting worse. My GP referred me to emergency admissions where it was confirmed that I had a deep vein thrombosis. I could have done without that, but the good news was that I passed my exams.
Rebecca Gledhill, final year medical student, University of Sheffield
Email: MDA97RAG@sheffield.ac.uk
studentBMJ 2001;09:305-356 September ISSN 0966-6494
