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Getting Ocrevus June 12th

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    Getting Ocrevus June 12th

    My neuro's nurse called this morning and said I am good to go. I will be getting my infusion on June 12th. It will take 6 hrs. I will get a pre-infusion of Benadryl. I will get 1/2 of Ocrevus the first time and 2 wks later I will get the other 1/2 .

    She said it goes thru medical ins. I am on Medicare with a supplement and I will have to pay for infusion room.

    It is so scary to start a new med. and I will be praying that it works well for all of us.
    God Bless Us All

    #2
    Best wishes to you as you start this journey and keep us posted.

    I'm currently on the Lemtrada journey.

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      #3
      Hi REG - this is great news! I'll be thinking of you and keep us posted on how it goes
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

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        #4
        Thank you pb909 and I hope you are doing well on Lemtrada.

        Thank you seasha and I will keep everyone posted.
        God Bless Us All

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          #5
          All the best Reg

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            #6
            Good luck Reg. A few days ago i went to listen to a top neuro speak on new treatments for progressive MS at our local hospital. Ocrevus was one of them. I went in quite curious and came out quite confused. He was recommending it but unfortunately it's not available up here in Canada yet. He said there's a way to get it but no ones trained to administer it. It sounds like it's the best bet so far. I'm very interested in hearing how you make out and in hearing any observations that you might make afterwards. Thanks for posting.
            It was one agains't 2.5million toughest one we ever fought.

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              #7
              Thank you Carolinemf and oceanpride.
              God Bless Us All

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                #8
                Lots of luck to you!
                Kathy
                DX 01/06, currently on Tysabri

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                  #9
                  Best of luck to you, Reg!

                  My MS Specialist had high hopes for this drug. I've been approved to start Ocrevus by new doctor at my MS Clinic, but still waiting for my general neuro to get on board. She flat out refused to put me on it at our recent appointment. Not the greatest feeling when more informed than your doctor. "Why change (on Tysabri) if your MRI is stable?" she says. (Well, it's more than obvious I am still progressing, so willing to see if this drug will finally slow this beast down) She's known all along my interest in this drug. My MS clinic won't allow infusion rx's to be written anymore unless they are infused at their clinic. Say it's all about safety, but don't doubt money paid to infusion center plays it's role. So my care supposed to be coordinated through both MS clinic and general neuro (who writes rx) if having infusion at local hospital of my choosing. My former MS Specialist was particular who I saw, and wanted someone involved who hd computer access to our records. Learned from own experience he wasn't always being sent test results, such as bloodwork. (He had personally chosen this general neuro, because at one time he worked with her, and trusted her knowledge) Unfortunately, my MS doctor passed away last year from an aggressive form of cancer, and contact with MS clinic now isn't happening as intended. He was heavily involved with clinical trials of the drug, both for RRMS and PPMS. (Still hard to believe he's gone ... MS community lost a man dedicated to MS and research. Worked up until day before he died. Have since learned his first wife has MS. You wonder what drives a person, guess I finally know part of that answer.).

                  Anyways, all very frustrating. Will see now if general neuro changes her mind after this MS Specialist contacts her. Had phone contact with MS clinic yesterday. Otherwise, guess I'll be making the trip to MS clinic. Just hoping she only needs to be further educated. Looks like I'll be one of the firsts to be infused with this drug with my local hospital system if all becomes a go. Scary to start a new drug, but hopeful at same time.

                  Please keep us informed on how things go!
                  Kimba

                  When you change the way you look at things, the things you look at change. ― Max Planck

                  Comment


                    #10
                    Thank you pennstater.

                    Kimba, I'm sorry you are having to jump thru hoops to get ocrevus, I know it is frustrating and I hope it works out for you.

                    I'm sorry your ms neuro died.

                    Yes it is scary starting new med, especially after reading the report Marco just posted.
                    God Bless Us All

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                      #11
                      Well, my neuro postponed my infusion because my lymphocytes was 6 and it needs to be 7 so I have to have my blood retested and hope it comes up.
                      God Bless Us All

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                        #12
                        May lymphocytes came back up to a 7. I will be getting 1st one on Monday 26th.
                        God Bless Us All

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                          #13
                          Originally posted by REG53 View Post
                          May lymphocytes came back up to a 7. I will be getting 1st one on Monday 26th.
                          Great news! Good luck. Will look for the update!
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #14
                            Originally posted by REG53 View Post
                            May lymphocytes came back up to a 7. I will be getting 1st one on Monday 26th.
                            REG53 That is GREAT. I wish you the BEST.
                            Peace to all,
                            LM
                            RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

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                              #15
                              Thank you pennstater and Fishytrout, I will keep you posted.
                              God Bless Us All

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