Most anyone suffering from an autoimmune disease should be familiar with the roulette wheel of medications. Physicians keep prescribing them until they find one that sticks. The one that works, where you don't suffer from its wide range of side effects.
With Sjogren's Syndrome, these second-line medications are called Disease Modifying Anti-Rheumatics. They are almost all immunosuppressants and meant to be steroid-sparing agents because, although steroids like prednisone do an excellent job at reducing inflammation (and hence joint pain) long term use has proven to be very harmful to joints like hips and knees. And so, a little more than a year ago my rheumatologist put me on Methotrexate. After about three months I developed excruciating headaches and so was switched to another drug, Arava. After about eight months on Arava, we decided that the extent of my hair loss was just not acceptable.
Enter Imuran. After a medication break over the holidays, I began taking this new immunosuppressant on January 3rd. A word of explanation here: I currently take something like 11 different medications on a daily basis, so I may not be as attentive as a normal person would be when starting a new medication. I was two weeks into it, had no headaches, and my hair loss had slowed down significantly. And this new medication had the added benefit of not taxing the medicatee's liver so there were no cautions about alcohol consumption while taking it. Primo for me! I scheduled myself for the required bloodwork to be done four weeks after starting the medication and thought no more about it.
I began to feel dizzy on January 18th and took some potassium and magnesium supplements because I had a strange premonition that my electrolytes were out of whack. But that night I began vomiting and so I thought I somehow acquired a stomach bug. I woke up with a fever of 101 the next morning and the diarrhea and vomiting became quite bad. Same too the next day. Yet everyone seemed to tell me that there was this terrible stomach bug going around which lasted two days. So even though I couldn't lift my head from the pillow without vomiting, I soldiered on. Saturday morning I felt somewhat better and was even able to keep my morning meds (including my Imuran) down for the first time. Soon I felt awful again.
For the life of me I cannot figure out why it took me so long to make a connection between my illness and the Imuran, but at last I realized that this immunosuppressant may be making it harder for me to recover. I truly felt like hell for the third day in a row and finally decided that I should go to the ER. By the time I got there, I was barely able to talk. Once I was evaluated by the triage nurses I was rushed into my ER bay where a resident and a nurse were waiting for me. I remember them putting me into a hospital gown and then I surrendered myself to their care - aware of the fact that I no longer needed to hold myself together. Grateful, so grateful to be there.
Things happened rapidly. Blood was taken. A thermometer was placed in an area I don't want to mention. Bags of IV fluids - including IV antibiotics - went into both arms. An abdominal CT scan was performed. I heard them declare success in bringing my heartrate and temp down. But my blood pressure seemed to remain a problem. Next there was discussion about the fact that my nose and lips had turned blue. And my skin was mottled.
What I didn't know was that I was in a state of septic shock and that my blood pressure was at an all-time-low of 50/30. My kidneys, liver, circulation, electrolytes, and other systems were all shutting down in order to protect my heart. My thinking was fuzzy. My heartrate had been at 184; my poor heart working overtime to try to restore my blood pressure. The only way to bring up my blood pressure was to insert an additional IV in a vein in my neck which flowed directly to my heart and begin to flood me with vasopressers. Thank God it worked.
But what had happened? How had I gotten to this state? My bloodwork revealed that my platelets were reduced and my white blood cells had all but been wiped out and were at extremely low levels - allowing an infection to enter my bloodstream and induce sepsis. I was experiencing a rare, but potentially life-threatening, reaction to Imuran.
I have since read the over 50 percent of the people who end up with septic shock do not make it. I have also read that each hour left untreated increases that mortality rate by 6 percent. I can't help but wonder just how many hours I had left in me.