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    Rituximab

    I had my first Rituximab infusion yesterday and was in the neurology infusion room for 5+ hours. I get another infusion in two weeks. Six months later we do the same thing but it beats going once a month like I had to when I was on Tysabri that did nothing for me.

    Rituximab has shown some good results in spms patients so I am praying that I am one of the lucky ones. I will let you all know how things progress.

    #2
    Thanks for your post. I wish you the best of luck with the drug infusions.

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      #3
      betterme,
      I look forward to your progress and thank you for sharing your story. I hope to start Rituximab next month, but have a hurdle or two left to clear.

      I wish you well ...

      Comment


        #4
        I just had my 3rd round of rituxan. This time was only one dose. I'm hoping to see some good results this time since I got UTI issue resolved. I had another allergic reaction which was well controlled and was able to continue with the infusion.

        Best wishes and hope you see good results!

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          #5
          I wish the three of you success with Retuximab
          Good luck and please keep us updated !
          Linda

          Comment


            #6
            Rituximab

            I had my first infusion of rituximab today it lasted about 5 hours they first gave me handful of meds including Benadryl to keep side effects at Bay and a bag of fluids a small amount of steroid and then they started the medication. A couple hours and I was exhausted I fell asleep on and off they had to take my blood pressure and temperature every half hour. Once I was home I ate then I went to sleep for about 3 hours woke up took my dog and got back in bed. Super exhausted low energy drowsy. I get my next infusion in two weeks and then after that it's every six months. No allergic reactions as of yet just super tired.

            Comment


              #7
              Wishing you all the best with your treatment.
              Thanks for keeping us updated.

              Comment


                #8
                This drug if I remember correctly sounds like what my neuro thought back in 2009 might be best for my MS used off-label.
                He even sent me to an oncologist/hematologist but in the end insurance would not cover it,
                and the appeal was denied too.

                Best wishes to you.

                Comment


                  #9
                  1st Dose two days ago

                  I have been on copaxone for 3.5 yrs now, I just recently had a pretty bad relapse that put me in the hospital for 2 weeks with rehab. My neurologist suggested I move to Rituxan but since it is not FDA approved for MS she said my Rheumatologist could order it for my RA and then I could stop the Copaxone. She said that she felt it would "greatly improve my quality of life." I am in a sort of weird cycle where I have difficulty with limping and walking and it is questionable whether it is MS or RA there are components of both and it is hard to tell. Sorry I am rambling....

                  I had my first treatment two days ago, it took almost 8 hours, I had a reaction of chills and they had to stop the infusion then restart it after giving me a dose of demerol and another dose of steroids and benedryl. I slept through some of the infusion, was tired and had a bit of a headache through the night. The next day I had some tremors in my hands (new symptom from last relapse) but it resolved and for the first time in at least 3 years I had no hip pain and walked without a limp for half of the day, I also felt like I had more energy. Today, slight headache but still more energy than before, so here is hoping it works for me!

                  I have another dose on day 15 then repeat every 6 months on day 1 and 15. I certainly hope things get better, anyone who has been on it longer please let me know how you did!

                  Thanks,

                  Dawn

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                    #10
                    @naiyve I hope the second infusion went well and you’re doing even better.

                    I have been on Rituximab since February 2017. It has been amazing. More energy, better balance, gait back to normal. Tysabri gave me horrible chronic migraines (had to be in darkness almost always) and weakness. Gilenya gave me liver damage and I had break through lesions.

                    Docs want to switch to Occrevus because why risk an off-label if you have a near identical option but I don’t want anyone messing with my miracle!

                    I receive 1000mg every 6 months. For the first infusion I was in a horrible washout from Gilenya. 24 hrs after the infusion I was walking straight and to the bathroom!

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