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Plan G now official: Infused with Rituxan yesterday

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  • Plan G now official: Infused with Rituxan yesterday

    Yet another chapter begins in my MS history of trying to keep this disease at bay. Yesterday I was infused with Rituxan, my seventh attempt at therapy. I've tried interferons (Rebif), Copaxone, and Tysabri. I failed to get on a clinical trial for Lemtrada. After five years of relative bliss following my stem cell transplant, the creep returned and I moved on to Aubagio, which only steadied the ship somewhat.

    So now it is Rituxan, a slightly modified form of which is expected to be approved late this year by the FDA (Ocrevus, aka ocrelizumab). Ocrevus is soon to be the only recognized therapy for progressive multiple sclerosis, so Rituxan is a logical choice for me. Why?

    In the months prior to my stem cell transplant, I began a precipitous slide with and without relapses, perhaps a precursor to secondary progressive MS. The transplant stopped that dramatically, but only for so long. I have not had a relapse, but the familiar un-ebbing slide restarted. Aubagio helped nip that, but I felt I needed to get more aggressive. And with Ocrevus still months away, I took a shot at getting Rituxan off-label. I was initially denied by my insurance company, but my MS specialist doc talked them around.

    The first transfusion went pretty well, although I did have a slight allergic reaction a couple hours in (redness on face and itchiness). A little extra Benadryl and prednisone cleared that up and things went smoothly from there, although I was pretty dopey (insert joke here). Took about six hours, as AMF Adventures predicted. Next infusion is in two weeks, and then six months (ish).

    I'll keep folks abreast here about my progress, although maybe that's a bad word to use. How about "successes" and lack of progression! That sounds more like it.
    Dave Bexfield
    ActiveMSers

  • #2
    hope your new meds do some greatness for you

    ...hope for the best and it will get there for you ...i know this disease is really the pits but ha we are still breathing ...ahhahahah...take care and be safe....i have had it since october of 2004

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    • #3
      Dave, best of luck on your new treatment! So proud of your courage too, and thank you for sharing your decision making on your DMD. It helps to hear how others approach treatment. I worry a lot about secondary progressive. (I know that such worry isn't helpful) But if not too personal, i'd be interested to know, other than enhancement on MRIs, what specificallyh makes you feel you are getting worse. For me, it seems insidious. I've had more bad days than good this year, and trying to explain to my neuro that I think I'm less strong, less endurance, greater fatigue, less involved in life (but he seems to feel objectively that outwardly my gross strength and physical ability is the same every 6 mos in our 20 min visit). This is good! I get it, I understand, but it makes me feel like I'm slipping down the MS slope privately, secretly, and accepting the decline. The decline only I feel.

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      • #4
        Thanks Suebee! My walking continued to slide, albeit the slide slowed somewhat with Aubagio (a drug I would recommend--easy to take, few side effects). I'd say you a probably right--it's a slide you can feel, but it's not always noticeable. Alas, with me it was.

        Probably should have started Aubagio a year earlier when I noticed all was not hunky dory. Went from walking 500m unaided to 400m (not too alarming), then 200m (yikes), now I don't know how far I can go.

        Cog and upper body are still pretty strong, but I figured I might as well go with a bigger gun since my MS has been ornery since Day 1. Fortunately most don't have a disease so feisty.
        Dave Bexfield
        ActiveMSers

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        • #5
          Looks like my next infusion will be in six months, not two weeks. The protocol was changed and the neuro is good with every six months depending on what the B cells are doing. Don't feel any different than before, but I didn't expect to. Hope this keeps my darn MS at bay!
          Dave Bexfield
          ActiveMSers

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          • #6
            I hope this keeps your MS at bay as well.

            I must say you have a great attitude, and I have a lot to learn from it.

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            • #7
              Go Go Gadget, Plan G!

              Hoping for the bestest bestest bestest, Dave. =)
              girl1dir =)

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              • #8
                So far the Rituxan has been going well, but in the last few weeks my MS has been a bit funky. Is it the stress of the election? The dramatic change of temps? Dealing with multiple family dramas not of my doing? My awkward Peru fall (technically slippery floors in the shower, I may have tweaked my shoulder)? Not sure. My neuro doesn't seem too concerned, but we're doing everything we can do, so I guess the current course needs to be patience.
                Dave Bexfield
                ActiveMSers

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