I had already been diagnosed for several years before my 52 days ICU stint. I was officially diagnosed in March 2003 (systemic & discoid). I am only 24 years old but, I was 23 when this all occurred.
Truthfully, I was feeling fine until a couple of days before my 52 day ICU stay. I was running a temperature of 103 for 4 days and I didn’t really have an appetite (I was barely eating; the smell of food would make me nauseous). Bottom line, my doctors summed it up “my whole ordeal” to my Cellcept use and a flare. My use of Cellcept is what contributed to my stroke. I had fluid in my cerebellum and I had to have intensive surgery and a shunt brain drain.
I have really only been hospitalized 3 times due to my lupus ( May 2004…….4 days, September 2006…….12 days and my extended stay in June 2007) My doctors contribute my “recent health obstacles” to my use of Cellcept ( I was on this medication from March 2003-June 2007). I was on three 500MG tablets daily of Cellcept. Basically, since it’s NOT widely used in lupus patients (mostly transplant patients), you don’t really see a lot of information about individual experiences. I took 2 pills in the morning and 1 pill in the afternoon, 1500 MG.
When I was talking Cellcept, I had a fair experience, I cannot blame ALL of my side effects on the drug, I was more focused on working and complete my Master’s than going to my doctor regularly (I WAS PARTLY AT FAULT FOR MOST OF MY SEVERE MEDICAL ISSUES).
At first, when I was in the hospital I was taking 100 milligrams (IV) of prednisone.
When I was on Cytoxan for that short period of time, my doctors recommended that I stay on it for longer but, I would be sick for 3-4 (vomiting when I did eventually eat) days after my treatments so, I refused any more treatments with the support of my family after I was “stable”. I only received 3 treatments from June 2007-October 2007. I also had http://en.wikipedia.org/wiki/Plasmapheresis treatments.
I also had speech and physical therapy when I was in inpatient rehabilitation from the time I was discharged from the hospital ICU unit in August 2007 until October 2007.
No, I don’t work, truthfully I can’t work. I need to walk with the assistance of a walker. I have not driven in a car by myself since May 2007. I still have a valid driver’s license and my husband ( We had been dating for a little over a year before I was I diagnosed. ) does let me drive occasionally when he is in the car with me. I am still with in a going battle with disability (that’s a long exhausting story in it self). I have physical therapy 3 times a week and speech therapy twice a week. I am definitely much better than I was this time last year but, I am not 100% there.