Recently, I received a phone call one night telling me that there had been a brea kthrough development at John Hopkins for the treatment of SLE. It had to do with a Chemo treatment that was showing great promise. I was told the news stated that after two year post treatment with this particular treatment there was no evidence of SLE in the trial patients. I have searched your website and I am unable to locate any information on this. Can you help me locate the information. My 11 year old daughter was dx’d with SLE when she was nine and is now two years into her treatment. She is being treated at Riley Childrens Hospital, Indianapolis. While the treatment has been somewhat successful, her c3 c4 levels see to be somewhat sporatic. With her SLE she has experianced renal problems. As you are aware, in children this young appearntly, the treatment process is somewhat a guessing game since very little research has been completed on SLE and children this young. The protocal changes frequently just to see what will work. Anyway, if you could provide a link to the information that I am seeking it would be helpful.
Dr. Michelle Petri in our Division has been using high dose ablative cytoxan therapy in patients with severe SLE. Cytoxan is a chemotherapy agent that is currently used at lower doses on a monthly basis to treat lupus renal disease and other life threatening lupus problems. The high dose protocol uses higher doses of cytoxan to destroy the abnormal bone marrow cells that are thought to cause lupus. Like other chemotherapy patients, patients on this protocol will transiently have very low white blood cell counts and platelets and thus are susceptible to infection and bleeding. Dr. Petri has shown success with a small number of patients. I am not aware of Dr. Petri or anyone else at Hopkins doing this in children.