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    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!

    #2
    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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      #3
      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.
      Virginia

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        #4
        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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          #5
          ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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            #6
            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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              #7
              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.
              s
              Jendie
              I've been a member of this forum during its different incarnations since I was dx in 9/98

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                #8
                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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                  #9
                  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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                    #10
                    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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                      #11
                      Cruiser, I am just kind of thinking out loud here. I don't know anything, but I was thinking that if you are stable enough to just hang in there until everything is back to normal with your WBC and B cells back up within a normal range and then gradually try something like Rebif, would that be a possibility? I am not saying that it is a panacea but I have been on it since it was introduced in the states in 2002. I was on Avonex for a year before that and then copaxone for 6 months. I was unable to stay on copaxone. You start out on a very low dose of Rebif, something like 1/8th of regular dose and then go to 22mcg and then on to 44mcg 3 times per week. I stayed on both of the lower doses longer than was recommended and took quite a bit longer to work up to the 44mcg, just to be sure that I did not have any problems. That worked for me. We are all different in what and how we tolerate these drugs, but just thought I would throw this in the mix.

                      I hope something works out well for you. We have a number of people on here who are not on any of the drugs and they appear to be doing well. So also keep that in mind in case you have to stay off of the drugs for awhile. I am glad now that they would not let me have Ocrevus. I really feel that I would be in your situation and that is what my Doctor was concerned about.
                      Virginia

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                        #12
                        Ocrevus sounds like it would be dangerous for you. So I hear your concern.

                        While waiting for something better, might IVIG be a good bet for you? My doctor sometimes uses it for his MS patients, it is indicated for MS as well as many other autoimmune disorders. And it wouldn’t mess around with your B or your T cells.

                        Is your doctor an MS specialist. If not, I would get a second opinion from a MS specialist about alternatives to Ocrevus. The Ocrevus stays in your body a while, right? If so, keep monitoring for cancer and infections.

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                          #13
                          Sunshine2,
                          I go to an MS Center here in Hartford. My neuro has MS himself which I've never experienced and has it's positives and negatives. :) I have had many neuros due to moving frequently as a military spouse. I will definitely look into IVIG. I"m feeling a little panicky right now as my legs are giving me trouble. I want to keep the abilities I have, you know?

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                            #14
                            Thanks for your answer, Cruiser. Yesterday I saw an article about using Rebif to treat COVID-19. I am going to ask my doctor his opinion about switching to that during the pandemic.

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                              #15
                              Originally posted by Ikoiko View Post
                              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.
                              Me too! When will you be discussing this with your neuro? I have been on rituxan for years. Before that I did IVIG for many years and it was quite helpful. You could ask about it. It is a blood product gathered from the blood of many donors. I was eligible for it because I was in a situation somewhat like yours.
                              Linda~~~~

                              Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

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