My son is 28. He's had nephrotic syndrome since he was 7. He's been on different medications but none have worked. He's been on prednisone for 21 years without coming off them unfortunately. He's just finished his last round of rituxan last month. Let's hope this helps him get into remission. Thank you for your video.
@nairnikhil92 He relapsed after a year but rituxan helped him into remission for the first time in his life. He's had rituxan again since then. So far so good.
@jasminesjourney i was recently diagnosed with Membranous Nephropathy (kidney disease). I'm 46 from Toronto Ontario Canada & have been told that ny kidneys are at about 22% efficiency, & that Rituximab is probably the one thing that can save my life & prevent dialysis. Youre an inspiration to me right now, keep fighting. If I ever get the money to afford this I'll have you to thank you for it. All the best from Canada!
I'll be starting Rituxin soon for my Follicular Lymphoma. The thought of infusions scares me! I so appreciate your videos showing what it's like. Seeing it and hearing your experience really decreased my anxiety about it. Thank you!
I also have nephrotic syndrome i am 28 years I had a relapse on may 10 2024 i will be having the Rituximab treatment but before that they asked me to have a different type of tablet so i will have to take that for my protien uria to get negative and later do the treatment.
Hi jasmine, very happy to see that you had no infusion reactions. Well done! Hopefully this keeps you in remission for long. My son had only one infusion in December,may be younger children only need one. He is in remission.he is still on tacrolimus which iam hoping the nephro will stop soon. Have you stopped cyclosporine since the infusion?
thank you, I’m also glad I had no reactions this time too. Happy to hear your son is in remission. Yes I stoped cyclosporin before the infusion but I will be going back on it again soon. wishing you and your son the best
Just watching for a small insight of what to expect as my 3 year old is having her 1st rituximab infusion on Wednesday . Hoping that this will get her into remission for a while as she's had a rough last few months . Feels like she has been on pred for the last year. Soon as we taper down constant relapses.
Hi! I’m an 11 year old and I have nephrotic syndrome My blood pressure got WAYY better and I just went to the doctor bc of it 2 days ago! I did the same thing with the hand, it hurt soo much when they did the water thing to get the blood I stayed in the hospital for a week and had a biopsy, I got ice cream & went to the hospital park tho 😊! I got good news when I went to the doctor! I might be able to stop taking the medicine 🤩 *Weird thing* I have peed in a coffee cup before so they can do the dip sticks🥲 It’s very cool to see a RU-vidr who has the same thing as me.. but still I hope you recover! The scariest thing that happened when I was in the hospital it wasn’t blood, it wasn’t the smell, not the squeezing, none of that When I was trying to sleep there was a child in the room next to me crying and screaming telling someone to “stop” it sounded like they were getting murdered at 12PM. We were in the ICU so Ig it’s normal? But that’s my experience Ty for making this video New subscriber!
I had one today (4th time). They put my cannula in my forearm, much better placement than hand! I think in the past they did my hand. I would ask if that's an option for you!
Hey hi 👋 your experience helped me through my 4 doses. Cannula fixing definitely the scariest part 🙂. How r u feeling now, any precautions u r following ?
Thanks for your message! I’m glad my video has helped! Yes I’m feeling good thank you, due another infusion soon! No precautions as such, just carrying in living my healthy live style as I am a professional performer 🙌
My son has nephrotic syndrome since he was 4. He is almost 10 now and he frequently relapses. He has taken a lot of steroids, also cyclosporine and now he is with cellcept. However, the doctor wants to try this medication and I was doing some research before. Thank you for sharing your experience. Let us know any update, please.
Hi I am Suganya. My 19-year-old autistic son has had nephrotic syndrome since his childhood (from 2 and a half year old). Last few months he has had two times relapses. He is on lot of streiods. Our nephrologist suggested this rituximab infusion therapy. we have to decide today to fix an appointment for this infusion therapy. we are very afraid how safe it is?. Kindly reply .How safe it is and It is required once a year or how many times a year?. we live in newyork. This treatment works for you. kindly reply to me. As a parent its hard to decide.
Hi hope you are well, hope u don't mind me messaging you. My son (26) was diagnosed in March this year with Nephrotic syndrome and he relapsed again earlier in June 21 whilst on a high dosage of prednisone 80mg. They have now started him on Cyclosporine 400mg, he has only been on it for a few days but already showing a difference. What meds are you on now and have u relapsed again?
iam 22...i also have nephrotic syndrome from last year now iam on steroids bcos of relapse last month... Had 2 ralapse if again it comes I have to take this injection that this mam is talking about... I hope you are okay.. Stay strong
