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Thread: Taken off Ocrevus- now what?

  1. #1
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    Default Taken off Ocrevus- now what?

    I have just been taken off Ocrevus due to extremely low WBC and no T cells after 18 months. Looking for a new therapy that allows my Lymphocytes to recover. Copaxone and Betaseron are out for me as well. My neuro tells me that I am relatively safe from MS right now because my white bloods cells are so low and they are what causes MS to activate. He also told me that vaccines, Covid or Flu, would not work on me right now due to no T cells. The count was actually 0 in my blood work. I am very nervous not being on a therapy as I have has MS for 20 years this month. Has anyone experienced this? Help!

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    Oh, Cruiser, sorry to hear that you are in this predicament. When was your last Orevus?

    ANN
    There comes a time when silence is betrayal.- MLK

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    Cruiser, sorry about this, I know it is anxiety provoking. Is your MS currently stable with no or little disability?

    This is the reason my Neurologist would not put me on it. He was concerned that in my case this could happen and that I might begin to get infections. I have been on Rebif for over 18 years, but I realize that would no longer be an option for you.

    I hope your WBC comes up soon.

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    Hi, Cruiser. Are you sure it is your T cells that are low and not your B cells? I am on Rituxan, which is pretty much the same as Ocrevus, and I know the drug works by lowering B cells. I have never heard of it lowering T cells, so would like to know the answer to this. Thanks.

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  9. #5
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    ((((((cruiser)))))) ~

    TO BRAINTALK!

    I am sorry that you're going through this difficult situation. I don't have MS, but I do want to ask you whether your neurologist has suggest Neupogen injections to bring up your WBC.

    My husband was on Opdivo for Stage IV lung cancer, which is an immunotheraphy drug. After a year of infusions, his WBC and platelets tanked. He had a platelet transfusion, and Neupogen injection. The first Neupogen was too strong, and he had side effects. The next time, his oncologist gave him 1/3 the regular dose. No apparent side effects, and his WBC began to improve.

    I don't know whether this is appropriate for you. I just thought I would mention it. You could ask your neuro about it or any other treatments to bring up your WBC.

    Unfortunately, you are at risk of infection, so I hope that you are isolating and wearing a mask, when you go out.

    I hope that there is a safe way for you to receive treatment.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    P.S. I also worry about not responding to a COVID vaccine, because my B cells are low. I am supposed to have my next Rituxan infusion this month, but not sure if I should go ahead with it.

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    Cruiser, I'm also on Rituxan, but no suggestions for you. I'll keep you in my positive thoughts that your medical group has some answers for you and will be able to give you ideas for keeping you safe during these uncertain times.

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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    December of last year. I was due in June but denied. Saw a hematologist and had an MRI last month to determine any other issues. No reason for low WBC and absololute lymphocytes other than previously on tecfidera (taken off due to positive JC virus test and low WBC) and Ocrevus.

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  17. #9
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    Ikoiko,
    My T cells, B cells(2 percent), WBC, and RBC were all very low. I had 2 iron infusions two weeks ago which brought the RBC into normal range and increased my energy level, which was great. They were concerned about Lymphoma/Leukemia but I was clear thank goodness. I just never seemed to recover from being on Tecfidera for 2 years previously. Very frustrating.

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  19. #10
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    Virginia,
    I've had MS for 20 years this month. Somewhat stable with some disability. My MRI showed C-spine progression which I can definitely feel in my legs. Lucky to still be slowly and awkwardly mobile.:) My neuro doesn't think Ocrevus would do anything for me because there are no WB cells to use anyway. The hematologist was very concerned I would develop PML unless those numbers go up. Don't know what to ask for at this point. Copaxone caused a seizure years ago before I started tecfidera so that is out unfortunately.

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