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  #11  
Old 02-06-2016, 10:11 PM
Veronica Veronica is offline
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Such good information here, Larry.... If I am JC positive, I am certainly going to speak with my neurologist about switching to Rituximab.... When I asked him about it in April, I had no reason to switch....and was just curious of his opinion of it. I am intrigued by the reports, including MSLazarus' here of improvement of symptoms, in addition to the disease modifying aspect.
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  #12  
Old 02-07-2016, 08:30 AM
MSLazarus MSLazarus is online now
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Default I am always glad to talk about Rituximab...

Send along any questions that come up.

I have responded well to the drugs I have tried. So, with management, I have no grievous symptoms.

I did IVIg for 8 years. That was 70g every other Monday. It was an 8 hour infusion day with the premeds and setup. I would lumber into the infusion and walk out strongly. It was that fast for me. The cost was enormous...the amount I was taking put the cost at around $80,000.00 a month. (I was lucky to have had a malignant melanoma which was successfully removed but made me ineligible for More standard drugs at that time.)

after 8 years it stopped being effective and I stopped to move on to Novantrone for two years.

None of the meds I do make functioning easy But they do make it possible and life is fuller because of them.
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  #13  
Old 03-17-2016, 01:10 PM
AMFADVENTURES AMFADVENTURES is offline
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Default Chemo Lite

Rituxin update,
The only reaction I had to all of the vaccinations I took was about 2 weeks of muscle and joint stiffness, there were not even any pseudo symptom exacerbation's that I could determine. In fact, within three weeks after the vaccinations I felt better than I've felt in the last couple of years.

I had the first rituxin infusion two days ago, 1,000 mg in solution, it lasted 5 and 1/2 hours. I did experience relatively minor flushing and itching around the head and neck about 2 hours into the infusion but it went away within the next hour and a half. I was a little ditzy the rest of the day, more so than normal as several of my friends can testify, probably the result of the Benadryl given prior to the infusion. The next day I was slightly short of breath and noticed a higher than normal resting heart rate but that all seems to have cleared up after another day. I've also had a little trouble sleeping since the infusion, possibly from the Solu-Medrol given with the rituxin. Other than that, this has been pretty easy.

Apparently this is the only infusion I will receive at this time. I will see my Neuro in a few months and I guess we will evaluate effectiveness and determine future dosages then. If anything develops I will be sure to let you all know.

Thanks for the input Linda, good to know you haven't experienced problems 5 years in. Hope you will stay current on this thread if anything does come up.

Larry
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  #14  
Old 03-17-2016, 03:36 PM
MSLazarus MSLazarus is online now
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Default Still on Rituximab and doing ok. new variation on rituxan has been fast tracked..

Sorry if I wrote this before bit I did not reread the thread. The new version is called something like ocrezumab??

Anyway, this new version has shown real benefit for some progressive MSers. Frankly, I read so much I forget a lot of it. Spring has begun here and there is too much greenhouse work to do! But, and this is the point, I am managing to function well. My husband is out planting the pea field right now!

I am the best pea-picking wife around...!
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  #15  
Old 05-27-2016, 06:22 PM
AMFADVENTURES AMFADVENTURES is offline
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Thought I'd pop in here for a quick update, being that I've been feeling pretty solid of mind lately, a state I fully realize is a matter of opinion. Be that as it may, I have been feeling pretty good since the rituxin infusion, actually since a week to 10 days before the infusion when I first began to feel the constant gnawing of the ms at my nervous system, which I'd been experiencing for the last few years, begin to lift. So, although it's likely the rituxin did not initiate this current remission, at least it hasn't impaired it.

There was a period of reduced red blood cell count right after the infusion but with the aid of iron complex supplements, I think I've overcome that. There haven't been any other adverse side effects from the infusion that I'm aware of and there certainly hasn't been any detectable ms progression. In fact, although I wouldn't say I've recovered any function, I would say that I am functioning with less effort, if that makes any sense to anyone. As a side bennefit, I've also been experiencing quite a bit less arthritic pain in various joints. I'm committed to at least a couple of years of this therapy by which time I hope to have a firm opinion of how well its working for me. In the absence of any change, I'll update again at my neuro app in a couple of months.

So far so good,
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  #16  
Old 05-28-2016, 03:43 PM
MSLazarus MSLazarus is online now
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Default Thanks for the rituxan update.

I am scheduled for a round in about a week and then two weeks after that. I have been able to stretch it for 8 months but now I am doing it every 6 months.
The rituxan is just great for me. I hope things continue to go well for you.
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  #17  
Old 09-09-2016, 08:48 PM
AMFADVENTURES AMFADVENTURES is offline
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Default Rituxan check up

Saw my neuro recently for my first post rituxan infusion appointment. We went over some recent blood tests he had me do. The B cells that the Rituxan is supposed to target were obliterated and I am still feeling better MS wise than I have in a couple of years. Other immune system measures were within normal limits, RBC count is still at the low end of normal limits but it doesn't seem to be causing me any problems. I also noticed a minor increase in fatigue, not the mind crushing MS fatigue, but more of a general malaise accompanied by a little extra sort of confusion or disorientation if you will, however, this has since abated. And my kidney function was normal. I also had an exceptionally good day, before and after a 65 mile bike ride, lots of energy, mind felt sharp, body parts working better than usual, something that hasn't happened in a while. And I seem to be more functional, longer on many mornings. All in all, we agreed the rituxan seems to be working well with no complications.

I have done another round of Hep-A, Hep-B, and Pneumonia vaccinations, again, no noticeable complications.

I get another infusion in a week. I don't expect any problems but will post if there are.


So far so good Linda, thanks,
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  #18  
Old 09-10-2016, 11:22 AM
Suebee Suebee is offline
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Join Date: Mar 2015
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Larry, that's great news! I jokingly thought, "I'll have what he's having!". Glad to hear you had no trouble with the hep a & b and pneumonia vaccines too. I'm curious if you had active lesions which led to your switch to Rixtan. I have "stable" lesions on MRI but feel an insidious MS weakening since my surgery last year. Because my lesions are unchanged on MRI, neuro feels risk of switching up DMD not good idea yet. Just wondering the reasons behind your switch. (I'm sorry if I missed your explanation somewhere else) Suebee
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  #19  
Old 09-10-2016, 01:40 PM
teena marie teena marie is offline
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Hi Larry,

I am so glad all is going well. Thanks for the update and good luck with the next infusion. I will speak with my neurologist at my next appointment about Rituximab.

Teena Marie
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  #20  
Old 09-15-2016, 02:04 PM
AMFADVENTURES AMFADVENTURES is offline
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Quote:
Originally Posted by Suebee View Post
Larry, that's great news! I jokingly thought, "I'll have what he's having!". Glad to hear you had no trouble with the hep a & b and pneumonia vaccines too. I'm curious if you had active lesions which led to your switch to Rixtan. I have "stable" lesions on MRI but feel an insidious MS weakening since my surgery last year. Because my lesions are unchanged on MRI, neuro feels risk of switching up DMD not good idea yet. Just wondering the reasons behind your switch. (I'm sorry if I missed your explanation somewhere else) Suebee
Hey Suebee, I'm not ignoring you, just haven't had an opportunity to respond but right now, I'm bored out of my gourd getting the Rituxan infusion. To answer your question, no, no active lesions have shown up on my mri's for at least 6 years, maybe 10, however, there have been enhancing lesions, one in the cervical cortex in particular that is probably the culprit in my recent decline.

Also, this is the first DMT therapy I've done, not counting statins.

I'm glad you asked because I wanted to mention a conversation about brain volume I had with my neuro. I asked if he had looked at my most recent MRI. Of course he hadn't, he'd only read the radiology report. I told him that I would very much like his overall impression of my brain volume relative to normal. He said of course he would do that and that brain volume was perhaps the most important indicator of DMT effectiveness, particularly in persons with SPMS. He also indicated that around 90% of the damage MS causes is NOT necessarily from the visible lesion activity but may be more accurately evaluated from changes in brain volume. 4 or 5 of the studies Dave posted here allude to the effect of MS on brain volume. (Apparently these will dissappear by the end of the month so be sure to look soon if you haven't already.)
http://forums.activemsers.org/showthread.php?t=2191

Good luck with your neuro TM. FYI, I have talked to a couple of guys who said that the Rituxan did not or is not working for them, but, IMO, it's still a good shot.

Infusion's done, 500 mg in 3.5 hours, no reaction at all. Gotta go.

Larry
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