|Introduction||My Story||My Labs||My Meds||My Advice|
In the spring of 1994, I started having joint pain in my fingers. I
had been programming computers since I graduated from college in 1992
and the first thing that ran through my mind was "Uh-oh, I'm 23 and
I've got carpal tunnel syndrome already." The pain was annoying enough
that I went to see my internist.|
Since then, I've been hospitalized three times and suffered other traumatic complications. What started as annoying joint pain developed into a chronic and potentially life threatening case of lupus nephritis (lupus that affects the kidney) and lupus cerebritis (lupus that affects the brain). Because of the nephritis, I began IV (intra-venous) pulse Cytoxan (cyclophosphamide) treatments - essentially chemotherapy - in March of 1998. In September of 1999, I decided to put the story of my lupus on the web.
When my doctor started increasing the spacing of the Cytoxan to more than every four weeks, my serologies started getting worse. So in March of 2000, my doctor decided to try CellCept (mycophenolate mofetil). I took it orally twice a day and it certainly seemed to have a positive effect. I was stable on it through December 2001.
As a flare started to erupt in January of 2002, I continued the CellCept and received six monthly pulse steroid doses. (Each "dose" was 1g of SoluMedrol IV each day for three days.) I felt that the course of pulse steroids was an aggressive but appropriate approach to the changes for the worse in the blood tests used to monitor lupus activity (double stranded anti-DNA and the C3 and C4 complement levels).
Even with this aggressive therapy, we couldn't get the the serologies back in line and by summer I was spilling 2g of protein in a 24-hour urine test and though the pulse steroids worked initially, the aDNA and complements started to worsen after the 5th dose. The decision was then made to go back to monthly pulse Cytoxan. I continued to work (though I felt gradually less effective) until some time in November when I had to go out on short-term disability.
My most recent hospital stay, at NewYork-Presbyterian Hospital began on Friday the 13th of December. I was not released until January 20, 2003. I think that the team of doctors that treated me did an outstanding job of quashing this latest flare and handling the side effects of the medications used to treat me. My treatment included 10 days of pulse steroids followed by daily, oral Cytoxan (125mg) and high-dose alternate-day prednisone therapy. I was also taking cortisone on the non-prednisone (oral) days. When I was discharged, I was on about 300mg of prednisone every other day. I (very!) gradually tapered off the immunosuppressants. I completely stopped the prednisone in February of 2005 and took my last dose of oral Cytoxan on March 14th, 2005. Spring of 2005 marked the first time in over 10 years that I was not taking some amount of prednisone - or any other immunosuppressant drugs for that matter.
This last flare was particularly frightening for me for two reasons: 1) It was particularly severe with neurologic and eye involvement and 2) even though we were monitoring my condition aggressively and it was treated aggressively at the first sign of trouble, I still ended up desperately ill. The effect on my family can't be described. As for my job, it's amazing that I'm still working for the company that hired me right out of college. My employer stood by me during a period of inadequate performance followed by an extended leave which was followed by a period of getting back into the swing of things. They had been extremely supportive during my prior hospitalizations as well.
Since the Spring of '05 and the discontinuation of all the immunosuppressants, I've been amazingly pleased with how well I'm doing but I've been afraid to use the R-word. I don't want to jinx myself. For many lupus patients, Remission seems mythical - something we only read about in books written by doctors who have seen thousands and thousands of lupus patients. But for now at least, maybe I'll knock on some wood, cross my fingers, and whisper when I don't think anyone's listening, "Remission."