Hi everyone. I have written about my son before but for those of you interested in rituximab I have some updates. Luke is 23 months old now, he was diagnosed with FSGS at 13 months after developing extreme edema. He was on steroids for four weeks and showed no improvement, his condition was so bad that he could not leave the hospital. He was started on cyclosporine but developed a bad reaction to it that almost killed him. Then they tried the plasma exchange (don't know how to spell the proper name for that), it helped control the swelling but he was still in very bad shape and developed a blood clot on the lung. Doctors were already talking about removing his kidneys. His doctor had no experience with using rituximab but heard that some people had good results with it so we decided to try it. Rituximab works by destroying the B cells in the immune system, it then takes about six months before they slowly start to come back. The protocol for rituximab was to give four doses over four weeks. Luke's B cells were all gone after the first dose but because of the protocol he received the four doses. Two weeks after the first dose we noticed very slight improvement (after getting his albumin infusion the levels in his blood stayed higher longer and he seemed to feel better, tried to walk after not walking for over a month). Seven weeks after the first dose he went into remission. Once in remission he was wonderful, we had no problems at all. He was taking one blood pressure medication and an antibiotic three times a week. Also every six weeks he needed to get IV IG to help with his immune system. But he had no edema, no fluid or food restrictions, he was not getting sick, his kidney function returned to normal and he had no side effects. From what I know many people stay in remission for a year or more but with Luke nothing is simple. After six months in remission blood test showed that his B cells are starting to return, two weeks later he was leaking protein at +1. It was decided to give him a dose of rituximab as soon as possible. Things took some time because we had to wait for room in the pccu since with this medication there is a risk of a bad reaction during infusion or shortly after. The hospital was very full and it was 10 days since he started leaking protein till he got the rituximab infusion. The last three days before getting the medication his condition began to deteriorate, he was peeing very little and was retaining fluid, his pee was dark and he had no energy and did not want to play, just wanted me to carry him. We did not know what to expect with this dose of rituximab but everything went well. He had no problems during the infusion and the next day he started to pee more and was acting more normal. Today is eight days since he got the medication and is doing great. He pees normally and acts normal. Three days ago his urine was still at +1 but then it went to trace and yesterday was negative, today he had a little trace but I remember that the first time around his protein also went up and down a little before he went into remission.
I hope this helps any of you that may have wondered about this medication. One problem with it is the cost. One dose of rituximab is over $5000 and the iv ig infusions are around $2000. We live in Canada and fortunately the government is paying for Luke's treatment, but I know that if there are cheaper options they are not too willing to do this.
Good luck to everyone