Sorry Dave, I forgot that you were on Rituxan before! FYI I saw my doc yesterday and ask him if other patients was feeling better after a year on O and he say not really!! But that most his patients are stable and no ones had new lesion and no need of MRI for a while. So will see in 6 or 12 months if I am the lucky one or it is just in my head? He tested my walking speed at 11 secs and it was 13 secs 1 1/2 year ago !?
To be continued. Alain
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Plan I is official: Ocrevus
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Thanks Alain! I'm patient(ish). Since I've already had a few Rituxan infusions, which is similar to Ocrevus, by fall it will mean 2 years on drug and potentially decision time. Fingers crossed! I'm always optimistic.
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Dave, we need to be patient! I am now 9 months with Ocrevus and I am getting slowly better.
First, all the things that don’t show like cog fog, fatigue and less bad days. This month my walking is really starting to improve and my family noticed it. To be franc my spasticity got worse few weeks after my second 1/2 infusion that I have to double on the baclofene. from here I got better.
Yesterday I was at the PT doing the regular pulling of my left leg away from my right
and we could believe it when my leg moved without resistance. I gain 10 degrees, No torture.!
I know we are all different and at different stages but It is the first time that I can tell a drug is slowing the beast. Let’s hope everyone can get some benefits. Alain
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The timed walk
I never asked what time was desireable.. I do it in 8 seconds and my neurologist always seemed quite satisfied. I do it because I take ampyra and the test is required. When I started the ampyra my 25’ walk took 10 seconds.
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Hmmmmmm. My MS appears to want to keep chugging. My timed 25-foot walk from this time a year ago was about 10 seconds, pretty slow. (The average person can do it in under 4 seconds. If you take over 8 seconds your disability is rather severe.) My latest test earlier this week? Turns out I am faster than a sloth (2 meters in a minute), but not much. It took almost 60 seconds! I am hoping I was just having an epically bad day--my spasticity was rocking. But still, yikes.
Average Pace: 3 Hours 21 Minutes per mile
10.13 Seconds Per Meter
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A bit over a month on Ocrevus and so far so good. Don't feel crummier, which is a plus. No side effects from the med, at least none that I've noticed. A little sleepy on day one, but that was the Benadryl.
My spasticity seems a touch calmer. Other than that, feel pretty status quo. Will update again in a bit....
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Even if there is not much difference between RTX and Ocrevus, I hope the placebo effect is good enough to give me bump.In the hours afterward I felt pretty darn good, and then remembered I was also given 100mg of a steroid as a pre treatment. So that burst that bubble, ha!
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Wouldn’t it be wonderful?
Rituxan has been good for me and I hope Ocrevus will be good for you. Having hope is a precious state of being.
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Great news! I really hope that it slow the beast.!
I think it is helping me.
Alain
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Great to hear! I’m thinking your insurance company doesn’t want to tangle with you again! Good luck!
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My first of three scheduled infusions is Tuesday. I'll get another in two weeks, and then a third full dose in six months....
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Plan I is official: Ocrevus
My insurer approved Ocrevus! (Probably a smart idea given my history.) Not sure if it will be a step up or a step across from Rituxan (both are very similar) but it's worth a go. Even neuros aren't sure, as there is a debate on this exact topic in the recent issue of Multiple Sclerosis Journal (paid access).
http://journals.sagepub.com/doi/abs/...52458518760717
Controversies in Multiple Sclerosis
Rituximab is an acceptable alternative to ocrelizumab for treating multiple sclerosis – Commentary
Bruce AC Cree
Mult Scler
Feb 22, 2018 | OnlineFirst
Rituximab is an acceptable alternative to ocrelizumab for treating multiple sclerosis – No
Mitchell T Wallin
Mult Scler
Feb 22, 2018 | OnlineFirst
Rituximab is an acceptable alternative to ocrelizumab for treating multiple sclerosis – Yes
Fredrik Piehl, Jan Hillert
Mult Scler
Feb 22, 2018 | OnlineFirst
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