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    Clinical Trial update

    Had dose no. 4 today- no reactions during infusion and am now home with 5 more hours and no reaction. Best news of the day is that my CD19 cell population has been consistently ZERO before each infusion. With that info. the neuro suggested prolonging the intervals between infusions and monitoring the CD19 count with blood work. When the trial ends- possibility of one more infusion- I will ask my regular doctor to do that monitoring. Being a slow rebounder might just be a good thing.

    #2
    Temagami, wow...Zero CD19 before each infusion? That is effective! I guess it makes sense that you could afford to space them out a little further.

    I plan to check with my Neuro next visit about when/if they will test for this. They haven’t said anything about it yet but indicated they would want to monitor some things after a couple of years of treatment.

    How are you doing with Ocrevus after 4 doses?

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      #3
      Four doses in and no new lesions and no relapses. Prior I was having 2 relapses per year and started off with about 40 lesions and was getting new ones. A tingly patch of skin that had been that way since dx and for 6 years cleared and is now normal. The trial only does brain MRIs but since I´ve not had a relapse indicating spinal cord involvement, I´m ok not having had a spinal MRI.

      Still have a narrow band of temperature comfort, still get tired esp. if hot and humid, still get spasms if I eat too much sugar or white rice and still have to get to the loo in a hurry to pee. Still sometimes have balance issues and still have the cog issues that I had. That said, not having relapses is HUGE as each one comes with the risk of not returning to baseline.

      I´ve been attending a great yoga class 3x per week and this is like PT only better as the teacher explains all of the alignment and then there´s the meditation part that connects mind-body. The yoga is helping with strength, flexibility, spasm prevention and balance.

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        #4
        Great that you’ve not experienced any relapses! I hope that continues for you and that you see some improvements in your sx.

        I agree about the yoga, I feel great when I am doing it regularly and it does have that meditative aspect. Last week and a half has been crazy at work so I’ve not been keeping the practice but things should settle down this week and I’ll be back on the mat more regularly again. 🧘*♂️

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          #5
          Trial ended for me last week. Got a final neuro eval and a MRI. MRI report shows no new lesions. EDSS stayed the same but neuro noted strength gain in legs. I attribute it to yoga, she attributes it to Ocrevus. I find out hopefully by the end of this week if regular insurance will continue to cover it. I hope to get the CD19 bloodwork done and only infuse when the percentage climbs to 5% (neuro´s recommendation). Spacing out the infusions lowers the risk of health consequences. I am a responder to this drug and for that am grateful.

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            #6
            Thanks for sharing temagami it’s all very interesting. I feel I can stand for longer more easier since I started Ocrevus. I’m not fatigued on it any more than before. The jury is still out on my balance issues but overall I’m no worse I don’t think. It’ll be interesting to find out how much of it we really need for it to accomplish its job.
            It was one agains't 2.5million toughest one we ever fought.

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              #7
              Temagami, thank you for the update and I am glad you are doing well. I will be having my 3rd full dose infusion this month and I will be asking about CD19 blood work.
              God Bless Us All

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