Road to Rituximab: Matthew Englefield’s New Treatment Experience December 13, 2018 by Kylie Karley Matthew Englefield has been living with Nephrotic Syndrome – Minimal Change Disease since 2012. We asked Matthew if he could share his experience of trying Rituximab as a treatment option for his Nephrotic Syndrome. A recent study has shown that Rituximab is more effective than Tacrolimus in maintaining disease remission and may be considered as first-line corticosteroid-sparing therapy for children with steroid-dependent Nephrotic Syndrome. Hello, my name is Matthew Englefield. I am 18 years old, and I live in England, UK. I was diagnosed with Nephrotic Syndrome in 2012 and have been on various medications since then. These varied from trying long-term steroid treatment, levamisole, tacrolimus, MMF (cellcept) and a very hard choice—Rituximab. I had a kidney biopsy back in November 2017 to see what long-term effects tacrolimus had on my kidneys. It was then that I was told I have a form of Nephrotic Syndrome called Minimal Change Disease (MCD). At the start of 2018, I met with my consultant to discuss the next potential form of treatment: Rituximab. This is a newer form of treatment that’s been used to treat Nephrotic Syndrome for roughly the past 10 years. I was very scared and drastically worried about trying out the medication, but I had one last option to try before Rituximab. That was to go onto MMF (cellcept) to see if it could maintain my remission. Sadly, after being on it for a month, it didn’t work. I was spiraling into another relapse, with protein present within my urine. I was left with no other choice but to go ahead with Rituximab. At this point I was petrified. I didn’t know what to do as there were no other forms of medication to try. Learning about the side effects of Rituximab left me feeling shocked. It was a very big risk I had to take—in fact, everything has been a risk since being diagnosed with Nephrotic Syndrome. I decided to go ahead with the treatment because I was hoping and believing that Rituximab could make me medication-free and maintain remission. I had to be in remission for a good couple of months to be able to get the treatment, otherwise I was at risk for something to go wrong during the procedure. For support during this tough time, I reached out to a family in Canada who I have become friends with over social media and asked them more about my last option of treatment. Their son Brock had recently gone through Rituximab. I was able to learn more about his experience and ask him questions about the procedure. This reassured me that I had made a positive decision in choosing my last form of treatment to help maintain remission. I was given a date for my Rituximab infusion in August, but I was not looking forward to it at all. I was very worried about trying the new form of treatment and I was constantly questioning myself, “What if the procedure went wrong?” or “What if I had any allergic reactions while having the treatment?” I had spoken to a lot of people who have Nephrotic Syndrome and I was asking them for advice either personally or on my Facebook page (which is dedicated to help parents and individuals who suffer from Nephrotic Syndrome). Finally, the day came to have my treatment. I got into the hospital, had my cannula (IV) inserted into a vein and had to wait until midday before I could have the infusion. I was not allowed to eat anything in the morning, but I could have fluids. If the procedure went well, it would take around 4-6 hours. At that point, all I could do was pray that it would. Before the Rituximab infusion, I had to have an antihistamine infusion to prevent any reactions taking place. Finally, after waiting a very long time the infusion began! I fell asleep during the infusion, as I was exhausted from waking up early in the morning, in addition to receiving the medication. I began to feel very hot and had developed a sore throat at the start of the infusion. This quickly vanished as the procedure carried on. Even during the infusion, I was quite worried that it would go wrong. If I had a reaction, the infusion would have to stop. Luckily, this didn’t happen and after every hour they increased the flow rate of the medication, which made the duration quicker. I was able to do things while the infusion was taking place, including using the restroom and have a walk around. I was very glad I could do this, because sitting down for a long length of time can be very boring! The nurses were very kind and made sure I was entertained so that I could have some form of distraction to make the time go quicker. After four very long hours I was glad to see that the infusion had come to an end! I had to wait an extra hour after it had finished to make sure I didn’t have any reactions or sudden side effects after the infusion had taken place. After a couple of days of having Rituximab, I lost a lot of energy. I found myself falling asleep a lot, which made me feel like an elderly man dozing off in the chair! But, after a couple of weeks of continuously falling asleep at very strange times during the day, I started to feel better. Sophie, a friend of mine, was also going through the same process I had been through and was waiting for her Rituximab treatment. She was finding it a very distressing time, just like me and was contemplating whether she had made the right choice of treatment. As I had gone through the treatment before her, she asked me a lot of questions about my experience with Rituximab and what happened during the procedure. It felt great that I was able to help and reassure Sophie, who also suffers from Nephrotic Syndrome, while she was waiting for her date for her Rituximab infusion. Rituximab can be a very scary experience, and I had second thoughts of having the treatment. But at the end of the day, I am glad I took the risk of going ahead with Rituximab for the hope of long-term remission. It has been three months since I had my Rituximab infusion, and I do not feel as tired as I once did. I am able to maintain daily tasks that we all have to tackle within our lives. I feel great! I have gone back to Judo, which I had to stop when waiting for my biopsy, and can now do more physical activity than I could previously. I am now waiting for my appointment with my consultant which is coming up within the next few weeks, and because I have been in remission ever since having Rituximab, I am hoping to be taken off steroids (prednisolone). I’ve been on steroids for over a year and once I get off them I will be fully medication free—something I have not been since my diagnosis back in 2012. I want to thank you all for reading my story and experience with Rituximab. I hope my story eases your anxiety towards trying Rituximab, for the hope of maintaining remission. — Matthew Englefield
Shumaila says December 16, 2018 at 10:36 pm My son was also not responding to tacrolimus Dr start cyclosporin let’s hope better. My son is 3 years old…
Aamir Ahmed says December 19, 2018 at 6:36 am Plz contact me at my no 03457979789.. my daughter is also patient of nephrotic syndrome
Matthew Englefield says December 19, 2018 at 1:06 pm Hi Shumaila, I pray that cyclosporine works for your son and I wish you a Merry Christmas!
Val says December 17, 2018 at 7:22 am Hi Matthew I had Rituzimab in July. Like you it was final treatment option. I experienced no problems when having the infusions. I had absolutely no side effects, unlike everything else! But the weeks went by and I was no better! Suddenly 2 weeks ago I began to feel better. I am peeing a bit more & slowly my build up of fluid is reducing. My Consultant is convinced that the Rituzimab is starting to work. Happy Christmas to you.
Matthew Englefield says December 19, 2018 at 1:05 pm Hi Val, I’m glad to hear Rituximab is working for you! I wish you all the best and Merry Christmas to you!!
Sarah Graham says December 19, 2018 at 2:04 pm Hi Matthew, Thank you for sharing your experience with Rituximab. I received rituximab in 2015 and 2017- I did not have any issues during the transfusion, however I did gain 10kg of fluid immediately after each transfusion (20% of my body weight) . I personally would never take the drug again as I strongly associate it with the rapid kidney failure I experienced in both instances, fortunately my kidneys recovered in 2015 but weeks after my last transfusion in 2016 my kidneys failed requiring dialysis and eventually a transplant. My intention is not to scare anyone currently being offered the drug- however I feel that this ‘miracle drug’ as my consultant described it was of no benefit to me. I would be wary of something which remains in your system for such a length of time- once it is administered it cannot be taken back.
Karly says January 12, 2019 at 1:14 am Thank you so much for sharing your personal experience. It helps to understand the details of the process from the patients perspective.
Hillary. says February 5, 2019 at 9:35 pm I’m scared out of my mind. My son is 14, we will begin this medication next week. They say he’s steroid dependent, but I felt like it was so hard to tell because he only relapsed every time he had a cold due to the cold weather during football season. He’s been on cellcept maybe 3 months. Still debating this new treatment . I thank you for sharing your story. How is everything coming along? We will keep you in our prayers, please do the same for us. My 14year old can be so stubborn.
Pam says February 6, 2019 at 7:27 am Such wonderful news to hear! I am so happy Rituximab continues to work for you. I am proud to say that my daughter was the first (and only child at the time) admitted to an Adult-only NIH (US) study in 2009 testing the effects of Rituximab on Nephrotic syndrome/FSGS. She was initially steroid responsive, then dependent (ended up in a wheelchair due to lumbar compression from steroids) and finally steroid unresponsive. Rituximab was the last choice to save her native kidneys. She underwent the first dose and did remit. This lasted for about 2 months until her B cells repopulated to about 300. She had a total of 13 infusions over 15 months. She always remitted and then would relapse about a month later. Alas, it was deemed that there was nothing more they could do for her, her native kidneys were most likely too scarred from the proteinuria she had been suffering from since 2004 (diagnosed at age 2). She ended up having a bilateral nephrectomy at age 9 and living donor transplant at age 10. She is 6 years post and doing amazing! We are grateful for no recurrence. I cannot stress the importance of clinical trials. I am proud to say that my daughter was somewhat of a pioneer in understanding the efficacy of a drug which now seems to help so many others. All the best!