Rituximab

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

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Please keep us posted. I have been doing a lot of reading on rituximab and the possibility that it is a cure for both FSGS and MCD is very exciting. You are right, the problem is the cost. From what I understand a full 4 week course cost around $10,000. I don't know if my insurance would pay for that or not, but right now they are paying about $2000 a month for my medications.

There is also the problem with lack of official group studies. Most of the articles I have read are just case studies. Insurance companies are reluctant to pay for experimental treatments.

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I've only seen this drug mentioned a couple times. I'm so glad it is working for your son. That is terrific. I wanted to ask you what is an iv ig? And when you say the rituximab destroys the B Cells in the immune system is that what causes the kidney to try to rid the body of protein? I am on hemodialysis now (42) for 2 1/2 years. My FSGS started as Nephritis 10 years ago and I went through Pred, Cyclosporine, etc. I had a transplant from my sister, but the FSGS returned almost immediately. Now they wan't me to try again, but I was hesitant because did not wan't to waste (not another live for sure) but even a cadavar kidney someone else could use. I'm going to ask my neph about this drug after a transplant because they were talking about plasma exchange and that sounds pretty scary. Are there any side effects with the rituximab? Thanks so much for sharing your great results. Maxi

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I was glad to see that something has worked for someone. I'm very happy for your son and you. I wanted to ask you what a iv ig is? And also you said the rituximab kills the B cells in the immune system. Are these B cells what causes the kidney to try to rid the body of protein because it thinks it it bad? Also are there side effects to this drug? I'm 42 and am currently on hemo dialysis for about 2 1/2 years. My nephritis started about 10 years ago and did pred, cyclosporine, then it developed into FSGS. I had a kidney transplant from my sister, but the FSGS returned right away. My Neph wants me to have another kidney transplant (not from a living donor of course), but I still am reluctant to waste a kidney. I will definitely approach her on this medicine for after transplant. Again I'm really happy to hear of your son's success. Thank you so much for sharing your knowledge and experience. Keep us updated. Maxi

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The Rituximab does work for some FSGS people. My daughter had a transplant last summer and the disease returned right away also. They tried 4 courses of Rituximab IV treatments (and yes, it's $5,000 each treatment). Rituximab suppresses the immune system so IVIg is intravenous immunoglobulin used to elevate the platelet counts. With the return of FSGS, she started Solumedrol pulses, plasmapheresis, Rituximab while staying on her anti-rejection drugs, Cellcept and Prograf. Her urine protein/creatinine ratios dipped below 1.0 after a month. The doctor decreased the Solumedrol pulses and plasmapheresis. It didn't hold and at two months, her protein/creatinine levels started rising. It's been 8 months post-transplant with no B cells, but her prot/creat climbed as high as 5. Now she's on a course of Cytoxan, Solumedrol pulses and plasmapheresis while on Prograf (Cellcept was stopped). This week her prot/creat has dropped to 1.1. She finishes this course of treatment at the end of March and we're praying for remission because she wants to go away to college. It's been a long journey! Good luck with the Rituximab because it may work for you.

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I hope your daughter will go into remission soon. Luke is in remission now and doing great, in his case it seems that it is the B cells that are causing his FSGS since once they are gone he goes into remission quickly. My son's doctor told me that some doctors feel that rituximab does not work for FSGS so obviously it does not work for everybody unfortunately. Right now Luke is only on some cozar and septra but we are going to seen his doctor on Tuesday and he wants to put him on cellcept. The problem is that right now the only thing that has worked for him is the rituximab but unfortunately apperantly it is common for people to develop allergies (or something like that) to this medication over time. So a time may come (no one knows when) when he will no longer be able to take rituximab. Since last time he relapsed as soon as his B cells started to come back his doctor assumes that the same thing will happen in a few months. The doctor says that cellcept affects the B cells and possibly might help to keep him in remission longer so he does not have to take rituximab as often. So I am stressing over this whole thing since I really do not know what to expect in the next few months, but then again you all know what that is like. I even do not check this websit as often as I did before because I' m trying not to be constantly thinking about all this as it is starting to drive me crazy. Good luck to all.

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Mika,

thanks so much for your info on rituximab- I am so happy it hs worked for your son! they are discussing this for my MCNS-steroid dependent daughter and we have been petrified. but she can no longer deal with the steroid toxicity. it is killing the rest of her.

she has not grown since age 3 (now 6) and her bones/osteroporosis are in terrible shape. if the cellcept/prograf does not work, that will be the next one to try. I am delighted tohear that it has worked for someone!

and enjoy what I pray is a permanent remission for your son!

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Hi Mika,
Thank you for sharing your information. My 12 yr old son Ryan will be receiving this treatment on Tuesday. He was diagnosed June 2008 and has not responded to prednisone, tacrolimus and the 3 day solumedrol I.V.

I'm very happy to read that Luke is doing better and I wish you well.

Take care

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Hi Connie,
I hope that rituximab works as well for your son as it did for my. The hardest part was waiting to see if it will work and it can take several weeks. My son is still in remission and doing really well, does not look or act sick in any way. He is taking Cellcept and we think that it is now keeping him in remission, since the first time he relapsed as soon as his B cells started to return but now his B cells are all back and he is still fine. I do not know how much experience your doctor has with rituximab but I know that if he/she would like any information then my son's doctor would help. My son's doctor does not have a lot of experience with this medication, I do not think that any of them really do because it is fairly new but I think it would be good if the doctors would communicate with each other more. If you want information on how to contact our doctor then just write to me, it would not hurt anyway and he might know something that your doctor does not or vice versa. There is a doctor in the UK who has been using this medication for a while and our doctor tried to contact her but had no luck. I know that some of the kids in the UK stayed in remission for around a year after getting Rituximab and taking no other medication. Please let me know how things go with your son. Good luck.

Mika

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hi....thx fr d advice about d FSGS treatment ....i m here in India and my son is also suffering frm FSGS lots of medi are given but no results ......day by day he is getting weak ....he was also on cyclosporine but developed a bad reaction ......and after almost 2 years no results .....he is tired of taking medi with no results but getting worst day by day .....i wd request u if u can let me know if this medi called RITUXIMAB is available in India or not .....or any other possibility 2 help him 2 get well soon of this FSGS......ill b grateful if u can help 4 my son........my id is ravindermehta1@gmail.com .....if any 1 can help me fr getting my son well plz do reply me on my mail id ......my god bless u all ...............

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It's been 9 months since my daughter's (18 yrs old) last dose of Rituximab and she has relapsed. Her protein/creatinine ratio is 16+. Out here in California, it's now protocol to have two doses, instead of the previous four doses, of Rituxan. After receiving a dose of Rituxan in late Dec., she received IVIG 3 weeks later. She will begin plasmapheresis 5 times weekly for 2 weeks to go into remission. I hope this works...and I'll keep you posted.

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Hi jlinsanjose
I hope they can get your daughter back in remission, keep us posted. My son, Luke, is doing very well. He is still in remission after receiving the one dose of Rituximab last January. He is now also taking Cellcept and receives ivig every six weeks. His B cells returned two months after the rituximab however they do not seem to be functioning totally normally since his immunoglobulin levels are still very low, his doctor does not know why but that might be what is keeping him in remission.
Best of luck to you and your daughter.

Mika

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We are off to try Rituximab for the first time tomorrow.
It has been nice and reasuring if you like, to read that others are trying it too, and that it has worked for others to so far :) I have been reluctant over the years to try anything "new" that came out, not that much has, it's a shame that there is a limit. But I feel it's now time for my daughter to have a go at something that may not have been used on everyone. To say we are nervous is an unstatement. Although I don't show that to my daughter, I have had my moments when she is not around. Nichole is excited and nervous, I am sure she will be fine. Trying something for the first time that knocks out B cells and your white cells is always a worry. When things settle down and we know more I will post the outcome, I have heard nothing but good things about Rituximab but given it's still in the trial stages and doesn't work for everyone, we just don't know. I will be sure and post up our experience regarding the treatment when I can :)

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I had two series of Rituxan (Rituximab, outside of the US) for post-transplant recurrent FSGS. If anyone has any questions about it, I'd be happy to answer them. My doses were $15,000 each (I was told they were "double doses" but I don't know if that is true). I just had two doses in a series, although I'm sure it depends on the dr. and being an adult. I had bad allergic reactions to the first dose of each series, but the second doses were like nothing was happening. Fortunately, I was able to withstand the reaction (and they gave me drugs to help - Solumedrol, Tylenol, and Benadryl), as it's helping, in my case. After the first series (which also included 28 plasma exchanges, but they weren't working that well), the disease was completely irradicated from my kidney (shown by biopsy). Before Rituxan, when the disease first recurred (5 months after transplant), my urine protein level was 3+. The second series, in June/July 2009, has kept my urine protein levels under 125 and as low as 30, but this time they only got as high as 600 before I was given the drug. Only time will tell how well it stays down and whether I'll have to have more series. Rituxan continue to work on the B cells for close to 2 years. I'm so thankful for a treatment that can help. I don't want to lose my sister's gift!!

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janevir, I hope it works well for you. This month it will be two years since my son was given rituximab last time. he is also taking Cellcept and is doing very well and is in remission. Even when he is sick he stays negative, only a couple of times he was trace when he was sick, he does not get sick too often. Good luck.

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Hi,
I live in Bangalore and my Doctor had prescribed me to use Rituximab for my mom who was CD20 positive. I was going through some blog s and saw that you are aware of the drug.
Can you please give me the cost details of this drug. Doctors were talking about Indian version of the drug. Could you please give me details of the same. in ccase if you have used it?
E: abhinesh.sethumadhavan@gmail.com

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Hi Mika,

Just curious what your nephrologist take on using Rituximab and Cellcept is. Did you ever try Cellcept before you tried Rituximab? Also, how soon did your son start Cellcept after the Rituximab infusions? Are you in the US?

Sorry for so many questions.

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Hi Macygracesmommy,
Our neph put our son on Cellcept after the rituximab because he said that Cellcept affects the B cells (as you probably know, rituximab kills all the B cells and then they start to come back after a while). He started cellcept about five weeks after the rituximab. We did put him on Cellcept once before trying the rituximab and it did not help at all, but at the time my son was very sick and we could not wait for a long time to see if it would work eventually. We live in Canada.

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Hi Mika,

I was just talking about you and your son today (again!). Lindsey has been doing well on rituximab (at NIH, Bethsda, MD), but she still relapses every 4 months - so over the past 16 months she has had 9 infusions.

she remits after 10 days or so, but the moment the b cells return to about 350, she relapses. hard.

they have started prograf in the hopes of it keeping her in remission. I had my doctor contact your doctor - I guess he did via email, but my doc wont add cellcept b/c of the fear of the JC virus. I do understand that, but what is all of this rituximab doing to her?? THat scares me too.

he is just not a fan of MMF. We too did MMF for 6 months with NO help a few years ago, she did not remit, it really did nothing,..... but maybe after being jump started by rituximab andkeeping the b cells at a lower constant level, it would work, like it did for your son.

what level does your doctor keep the b cells at for your son?

so glad to hear he is doing well.... I hope to convince NIH soon....

thanks,
duker

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Hi Duker, Sorry that Lindsey is relapsing so often. I think your doctor should give Cellcept a try, Luke is in remission for over two years now. I know that Cellcept has its risks but all these medications do. I worry about Luke a lot and try not to think about stuff much because its too stressful when you consider all the things that could go wrong. But we do what we do because we have no choice. So I try to focus on the fact that he is doing well (at least today since we never know what tomorrow will bring) and he looks and acts like a normal little boy.
As far as his B cells, the numbers are back to normal, they have been for a long time now. The strange thing is that they still do not produce the antibodies the way they should and without getting ivig every few weeks his levels drop very low. The doctors really can't explain this and do not know if it is due to the rituximab or there is something wrong with him (they are pretty sure it's not from the Cellcept). Now we also see an immune system specialist in our city, which is nice so do not have to travel far like for the neph. Last fall he sent us to see more specialists in Toronto (that's a long drive) but they did not find anything to explain this either. We have been going for the ivig every six weeks, but now are trying every eight, just went yesterday. Other then that Luke seems fine. He does seem to get tired more then normal for a four year old, I think its from the Cellcept since people on here have been complaining of being tired while on that med. So things are not perfect but still a lot better then for a lot of people with FSGS.
Let me know how things go, I hope you can get your doctor to at least try Cellcept because it might be a good option. take care.

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I am a post kidney transplant and have been successful for 3 years. I've been on Prednisone, Prograg, Gengraf, and Cellcept. In late February 2010, my legs, abdominal, and face swelled up. I went to the doctor and had labs drawn and they said I was leaking over 3g of protein. They then did a biopsy and diagnosed me with membranous nephritis. This is the first time I have ever been diagnosed with this condition and the doctors are not sure why I got it. Early April, I had the ritumaxib infusion, 1,000mg. I had a bad allergic reaction, swelled up like a blimp all over, had severe abdominal pain and ended up in the hospital with pancreatis for 5 days. 3 weeks later they did another ritumaxib infusion but decreased it to 500mg because of the reaction. They do not have any further treatments scheduled at this time. I am concerned that the dosage may not be enough to treat MN and I am still spilling 3grams of protein. Also, my creatinine level has rose from .06 to 1 now. They currently have me on Prograf and Prednisone 40mg. I have not seen any changes or improvements and I still have some swelling in my legs, eyes, but mostly the abdominal area. I know the doctor said it could take several weeks to months. How long did it take to see improvements for any of you that have tried this treatment?

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