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Getting Ocrevus June 12th

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    #16
    I had my first infusion today and all went well, no problems. It took 4hrs and 45 mins. that included the pre-meds. I have been feeling really tired since I got home.

    I have been concern about the patient that got PML after stopping TY in Jan. and having the infusion in April (I believe that is correct). NP told me none of the patients in the trial were on any prior med for ms. and she didn't know if any were JCV+.

    I wish all of us the best.
    God Bless Us All

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      #17
      Hey REG,
      I just saw this post. I am glad you have started this journey! I wish you the best and hope this med does everything you need it to.
      Thinking of you
      Linda
      Linda

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        #18
        Hey Linda and Thank you. Are you still doing well on TY?
        God Bless Us All

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          #19
          Ty is still my drug of choice! Heat is kicking my bootie, mostly I am hangin in
          Let us know how ur doing..
          Linda

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            #20
            Linda, I'm glad you are still doing well on TY but I'm sorry about the heat.
            God Bless Us All

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              #21
              I had my 2nd infusion yesterday, all went well. I was tired afterward and I couldn't sleep from the steroids I guess. I've had a lot of energy today even though I didn't sleep.

              I was supposed to get it last wk but had to cancel.
              God Bless Us All

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                #22
                Feedback on Ocrevus

                Originally posted by REG53 View Post
                I had my 2nd infusion yesterday, all went well. I was tired afterward and I couldn't sleep from the steroids I guess. I've had a lot of energy today even though I didn't sleep.

                I was supposed to get it last wk but had to cancel.

                My Neuro is recommending Ocrevus in addition to the IVIG infusion which I'm currently receiving for CDIP. The IVIG is helping with neuropathy and strength in my left side weakness. I'm very interested in your feelings, good and bad about your Ocrevus experience.

                Feedback from any other Ocrevus users is greatly appreciated too.

                Thanks everyone.
                Sue

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                  #23
                  Hello Sue, My first two infusions went very well, no problems. I felt tired after ea. but I think it was from sitting for 4 1/2 hrs. and Benadryl. I haven't felt any difference in sx's.

                  Wish you the best with whatever med you chose.
                  God Bless Us All

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                    #24
                    I just had my second part of the first round yesterday . No side affects at all. Today I'm getting around better, my muscle tightness isn't as bad as normal and the numbness in my feet has eased just a little. I'm hoping it continues and isn't all in my head.

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                      #25
                      moose, I'm glad your infusions went well and seeing some improvement, that great. I hope it continues.
                      God Bless Us All

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                        #26
                        Reg53? It's been a while since you've got ocrevus ? Have you noticed anything positive ? Just been reading the posts everyday trying to get a glimmer of hope. Hopeing that all symptoms have eased for you. Moose is in Maine that's not far from me said the stiffness let go a bit. That's very good. Hoping to hear more from moose too.
                        It was one agains't 2.5million toughest one we ever fought.

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                          #27
                          Hi oceanpride, I haven't seen any improvements in my sx's. I'm glad I didn't have any reaction to med and if it slows progression I'll be happy.
                          God Bless Us All

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                            #28
                            Yes. Thank you very much. They have gave it a good rating for slowing progression. All the best.
                            It was one agains't 2.5million toughest one we ever fought.

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                              #29
                              Medicare coverage for Ocrevus

                              Originally posted by REG53 View Post
                              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.
                              Hi Reg3

                              May I ask you how medicare covered your infusion of Ocrevus ?
                              How much you needed to pay ?

                              Thanks

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                                #30
                                Hello brave, The ms center contacted my insurance and told me it will go thru my medical not part D and I would only pay for the infusion room. I have not received and bill as of yet.
                                God Bless Us All

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