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  #31  
Old 06-07-2017, 06:52 PM
AMFADVENTURES AMFADVENTURES is offline
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On the Rituximab front, it's been 8.5 months since my last infusion. I contacted my neuro about getting another infusion because I'd been feeling a little MS'y lately. He sent me in for a blood test which came back indicating my B cells still totally depleted. As it turned out, by the time the blood test came back I was feeling quite a bit better. Apparently the MS'y feeling was a pseudo exacerbation probably brought on by an absessed tooth which I've since had taken care of.

Hope the Rituxan is working for you Dave.
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  #32  
Old 07-17-2017, 12:56 PM
AMFADVENTURES AMFADVENTURES is offline
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I'm going on 9 1/2 months since my last rituxan infusion now and blood tests indicate my B cells still have not regenerated! Even if the blood tests are not completely accurate, I believe this to be largely true because I have yet to feel the MS progression gnawing at me like I did prior to starting the rituxan therapy.
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  #33  
Old 07-21-2017, 02:07 PM
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Dave @ ActiveMSers
 
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Larry, this goes without saying, but this is fantastic news. I hope for the same results!
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  #34  
Old 07-23-2017, 12:20 PM
penkalet penkalet is offline
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Great news and I am happy for you guys. I am starting Ocrevus next month so will see if it work as well.
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  #35  
Old 09-03-2017, 02:29 PM
AMFADVENTURES AMFADVENTURES is offline
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Well, made it nearly 11 months before the target B cells began to regenerate, finally kind of begged for another infusion. My fear is that if the MS does flair back up, being secondary progressive makes it significantly more difficult to recover from any damage it does.

I had the infusion a couple of days ago. It took 3 hours flat. I felt like crap that evening but we'll enough the next day for yoga. The day after that I did intervals on the bike but turned in times about 10% slower than usual. That's OK, I'll take it over more MS damage. I'm going to talk to my neurologist about just going on a 9 month schedule. This stuff seems to work for me and to the extent I can avoid further MS damage, for the time being anyway, I'm willing to risk secondary complications.

Thanks Dave and Alain, I hope this works as well for you guys too.

Larry
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  #36  
Old 09-03-2017, 08:27 PM
MSLazarus MSLazarus is online now
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Default Good news...

I have been on rituxan for about 5 years...
My neurologist and I used to stretch the time between infusions to about 8 months. Maybe a couple of years ago I pushed to go on the general protocol used for rituxan I nfusion of every 6 months.

What was happening was that the great positive effects would wear off and leave me in purgatory until the next infusion. This 6 month schedule works for me.

What has happened in my years on rituxan is a slow but steady improvement in aspects of my MS that matter the most to me. Each infusion from the beginning returned some level of energy. That has continued increasing so that days of fatigue are rare.

I have been able to stand and work on my farm. This only lasts for short times and by the end of a long row of picking something I am on my knees and crawling while I pick. I use a hard bushel to help me move along. But the time I can manage to walk is enough to change my farming trouble by 10%?

I am never sure of numbers but I have been improving on rituxan and along with adjustments to keep me doing what I want to do...life is better.

I do not mean to mislead. My situation is better but not one that is in any way easy. It is just easier with rituxan. And maybe some lost abilities have returned because of rituxan. Maybe.

Last edited by MSLazarus; 09-03-2017 at 08:30 PM.
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