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Thread: Rituxan maintenance

  1. #11
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    I think thereīs no way to determine only ANCA-producing B cells. The blood analysis I've been submit to shows the total linphocytes count and ANCA titering. Indirect way to show ANCA-producing B cells depletion.

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    Default Re: Rituxan maintenance

    I have been getting Rituxin every 6 months for maintenance since 2014. I have no side effects and take nothing else. I do get a breathing treatment at time of infusion. I have blood tests done every 3 months. I am still confused as to why I am doing this. My labs don't show I need it and I can't really tell what a flare is. I don't think anyone has been testing my b-cells. I am 68 so I have plenty of aches and pains, get tired, and have a slight runny nose off and on. Would like to go longer than 6 months but Dr. leaves it all up to me. How do you decide when you need one? I know everyone is different. My kidneys and lungs were effected in the beginning so worry what a flare would be. Any ideas??

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    Default Re: Rituxan maintenance

    Hi,

    What you describe is what I have and go through. I am 56 years old. My disease started in my lungs and they diagnosed it pretty quickly (in about 9 months). It was also affecting my kidneys and connective tissue. Because of the connective tissue impact, it left me with pretty bad neuropathy in my legs and feet and milder in my hands.
    I do also get the same Rituxan infusion every 6 months. Started last year. Just had my third one. First one was a double dose and the second and third have been single doses (preventive measure). My blood work looks ok. My joints hurt a lot though. Doctor wants me to take prednisone to help with joint pain but I refuse. I was on such a high dose of prednisone, it did terrible things to my body. I am so scared to take prednisone that I prefer to withstand a lot of pain. I take a lot of Tylenol, sometimes Ibuprofen and when it gets really bad, Tramadol for my joint pain. I try not to take too much Ibuprofen bc it's bad for your kidneys and no more than 2 Tramadol pills a day. I do get runny noses as well and go through bouts of extreme tiredness. Not sure what that means.

    I am in what the doctor call a "drug-induced remission". They have told me that after 2 years they try to stop them and if I don't have a flare, then it means I am in a true remission.
    Now, infusions take between 2-4 months to work so if you wait until your blood work shows the flare and/or you start having symptoms, it might be too late for your body to recover as you can go into organ failure while you wait for the infusion to kick in. My first infusion took between 3 to 4 months. I was on a very high dose of prednisone while we waited for the infusion to kick in. It took forever.
    So, you always want to be ahead of the flare. They do the infusions every 6 months because it takes around 9-10 months (don't quote me on that) for your body to re-make those bad cells and you don't want to wait until they are re-generated. I may not be explaining it in a very scientific way but I think that's the gist of it. You could stop the infusions and see what happens but you always risk going into a flare and compromising your organs. You have to be very careful. That's probably why your doctor is saying it's up to you. I imagine they don't want to feel responsible if you go into a flare as a result.

    I haven't been taking infusions that long so I am not a good candidate to try it stopping them so I cannot tell you what that is like. I suggest you go to one of the Vasculitis centers (google them) and consult with a Wegener's specialist. I've been to the Cleveland Clinic for consultation twice. . Those doctors know a lot more about Wegeners since they see more Wegeners patients that your typical rheumatologists or nephrologists or whatever other specialist you might see. I would trust them to recommend if you are a good candidate to stop the infusions.
    That's what I would do before stopping the infusions. Feel free to ask any other questions. This is an awesome group. I would be interested in knowing if anyone in this group has been able to stop Rituxan infusions and is in a constant, true remission. It would be very encouraging for others to know that it's possible. Good luck and feel free to stay in touch.

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  5. #14
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    Default Re: Rituxan maintenance

    Loisann11- My doctor has said to me that he would like to keep me on full treatment for two years that is not interrupted by a flare before thinking about backing off.

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    Default Re: Rituxan maintenance

    Thatís totally consistent with what Iíve heard.

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    Default Re: Rituxan maintenance

    To answer the OP's thread -
    I had an initial 4 doses of Rtx over a 6 week period. I then had a top up every 4 months for a further 18 months. In total I had 9 infusions over an 18 month period. The last infusion was January 2017. In December 2017 I had B cells back. The dr said that patients who have had a few doses of RTX don't get B cells for over 2 years. I was the exception as they reappeared after 11 months and I'd had more than what they would consider "a few doses" of RTX.
    Diagnosed April 1995

  8. #17
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    Default Re: Rituxan maintenance

    I had the initial 4 round RTX, then 2 rounds 6 months later, then 1 round 6 months later. I expect to be on every 6 months for a couple of years.

    Our only misstep was weaning off pred too quickly. 60, 50, 40 then down to 30 in two week intervals. When down to 30, symptoms came back and had to jump back to 50. That prolonged overall time on high doses. Finally down to 2.5 a little over a year into it. I feel very fortunate and understand it is not an exact science.

    Thanks to all posting regarding B cells. I wonder what we miss out on by not having them. Maybe just a little more susceptibility to colds. Iíll happily live with his over alternative.


    Sent from my iPhone using Tapatalk

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  10. #18
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    Default Re: Rituxan maintenance

    Thanks so much for info. I had my first infusion in 2014, took the 4 week process. 1 each week. I also had my blood cleaned by that machine, I forget the fancy name for that. Was in hospital for 10 days with kidney issues. I have been doing Rituxin every 6 months since. I have gone 7 then get scared and do it again. I am under the impression that the infusion is immediate. My Dr tested before and after. I took prednisone for the first 6 months. Just to help the body heal. I got off as quick as I could. I had every side effect listed, not fun. I should have had one in mid June it but am waiting for a Dr. appointment July 13th to ask if needed.

  11. #19
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    Default Re: Rituxan maintenance

    Just went to Dr. today and all is good. Labs are all normal. We have decided to wait till labs show a problem or I have signs of a flare. He explains that the CD20 part of my B cells gets wiped out by the Rituxin. He can do a test for that but does not use that as a normal marker. Mostly CRP, sed rate, and ANCA show if problem. Also urine tests to make sure kidneys are fine. It has been 7 months since last infusion. Most of my problems are over thinking every little "twinge" I have and wondering if it is a flare. My normal aches, pains, twinges are just my worrying too much and based on my weight, age, and in-activity. Hope it all works out for you.

    Quote Originally Posted by jmq View Post
    Hi,

    What you describe is what I have and go through. I am 56 years old. My disease started in my lungs and they diagnosed it pretty quickly (in about 9 months). It was also affecting my kidneys and connective tissue. Because of the connective tissue impact, it left me with pretty bad neuropathy in my legs and feet and milder in my hands.
    I do also get the same Rituxan infusion every 6 months. Started last year. Just had my third one. First one was a double dose and the second and third have been single doses (preventive measure). My blood work looks ok. My joints hurt a lot though. Doctor wants me to take prednisone to help with joint pain but I refuse. I was on such a high dose of prednisone, it did terrible things to my body. I am so scared to take prednisone that I prefer to withstand a lot of pain. I take a lot of Tylenol, sometimes Ibuprofen and when it gets really bad, Tramadol for my joint pain. I try not to take too much Ibuprofen bc it's bad for your kidneys and no more than 2 Tramadol pills a day. I do get runny noses as well and go through bouts of extreme tiredness. Not sure what that means.

    I am in what the doctor call a "drug-induced remission". They have told me that after 2 years they try to stop them and if I don't have a flare, then it means I am in a true remission.
    Now, infusions take between 2-4 months to work so if you wait until your blood work shows the flare and/or you start having symptoms, it might be too late for your body to recover as you can go into organ failure while you wait for the infusion to kick in. My first infusion took between 3 to 4 months. I was on a very high dose of prednisone while we waited for the infusion to kick in. It took forever.
    So, you always want to be ahead of the flare. They do the infusions every 6 months because it takes around 9-10 months (don't quote me on that) for your body to re-make those bad cells and you don't want to wait until they are re-generated. I may not be explaining it in a very scientific way but I think that's the gist of it. You could stop the infusions and see what happens but you always risk going into a flare and compromising your organs. You have to be very careful. That's probably why your doctor is saying it's up to you. I imagine they don't want to feel responsible if you go into a flare as a result.

    I haven't been taking infusions that long so I am not a good candidate to try it stopping them so I cannot tell you what that is like. I suggest you go to one of the Vasculitis centers (google them) and consult with a Wegener's specialist. I've been to the Cleveland Clinic for consultation twice. . Those doctors know a lot more about Wegeners since they see more Wegeners patients that your typical rheumatologists or nephrologists or whatever other specialist you might see. I would trust them to recommend if you are a good candidate to stop the infusions.
    That's what I would do before stopping the infusions. Feel free to ask any other questions. This is an awesome group. I would be interested in knowing if anyone in this group has been able to stop Rituxan infusions and is in a constant, true remission. It would be very encouraging for others to know that it's possible. Good luck and feel free to stay in touch.

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