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  #41  
Old 12-05-2018, 07:29 PM
AMFADVENTURES AMFADVENTURES is offline
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I did another Rituxan infusion yesterday, they get easier and easier. This one took 2 hours, the only side effect was a slightly fluish feeling yesterday evening. Felt fine today! I think the fact that these things get easier and have less short term side effect is because the target B cells stay pretty much obliterated, hence very little new damage for your body to contend with.

I tried to push the one before this one out to 9 months and ended up with an MS flair before I got the Rituxan. Now I'm just going with an infusion every six months. It's not worth the damage a flair causes if you're secondary progressive. Good stuff if it works for you!

Larry
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  #42  
Old 12-06-2018, 03:41 PM
MSLazarus MSLazarus is offline
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Default Good report

I tried pushing infusion to 8 months and suffered a flair as you did. That was a couple of years ago. Now I have been asking if infusions could come every 3 months instead of every 6. I was not thinking of asking for an increase in dose but just wondered if anyone has tried a more constant infusion schedule to help prevent the month long slowdown I have before each infusion.

Does anyone do infusions on a different schedule than the protocol of 6 months?

I got an infusion yesterday and the positive impact is even more dramatic than usual. I have been walking steadily today whereas yesterday one leg was really dragging. I’ll have to go dancing!
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  #43  
Old 12-06-2018, 07:21 PM
AMFADVENTURES AMFADVENTURES is offline
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I haven't heard of anyone getting a Rituxan infusion for MS any more often than every six months. I think people with RA can get it as often as monthly but I don't know the usual dossage. One guy I know does get a higher dose than the standard 500 MG, something you might ask your Neuro about.

Might be interesting to see if Ocrevus worked longer for you. Seems I heard somewhere that the body can overcome Rituxans toxicity easier than Ocrevus's, an advantage of Ocrevus, but I really don't know.
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  #44  
Old 12-07-2018, 09:00 AM
MSLazarus MSLazarus is offline
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Default Thanks AMFADVENTURES

Ocrevus is the med that my neuro has waiting in the wings..if rituxan stops working he believes we should give it a try. Since they are virtually identical I am not sure why but I am an adventurous patient🙀

I will ask about dosing. Thanks
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  #45  
Old 07-22-2019, 07:39 PM
AMFADVENTURES AMFADVENTURES is offline
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Well, I'm only slightly delinquent in posting this. I did another Rituxan infusion last Monday and again, was kind of a ditz the rest of the day post infusion. Mondays are the day I take care of business. I paid the bills, sealed and stamped the envelopes, put them in the trash and went to the post office to mail them and wondered what the hell happened when I figured out I didn't have them. It took me a half hour to finally find them in the trash back at home and I had NO recollection of how they got there??? I don't normally experience this kind of short term memory problem except on Rituxan infusion day. Just an FYI.

Last time I did an infusion I didn't feel very good the day after but this time I was just fine although I did take it easy. On Wednesday I went for an easy bike ride followed by a baseball game in excruciating heat, walked at least two miles that day and didn't really experience any extraordinary problems with any of it! I got to say, this therapy has got to be about as easy as it gets.

This one was a tabout 7.5 months after my last one. After I had the "Ageing MSer and potential discontinuation of therapy" talk with my Neuro, which I declined, he called me to persuade me to go to an 8 month infusion schedule because of a gut infection I got shortly after I started Rituxan and because blood tests at 6 months indicated that my B cells had not begun to regenerate. No problem, although I suspect B cells might not be the only thing Rituxan is affecting!

Anyway, this therapy seems to be working pretty well. I suspect most of the problems I continue to have are due to the effects of age on an already compromised neural system and although that's not pretty, I continue to believe that the Rituxan is effectively keeping the MS at bay. I wish it had been brought to my attention at least several years earlier, I might have saved a few more neurons!

Later,

Larry
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  #46  
Old 07-24-2019, 05:35 PM
MSLazarus MSLazarus is offline
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Quote:
Originally Posted by AMFADVENTURES View Post
Well, I'm only slightly delinquent in posting this. I did another Rituxan infusion last Monday and again, was kind of a ditz the rest of the day post infusion. Mondays are the day I take care of business. I paid the bills, sealed and stamped the envelopes, put them in the trash and went to the post office to mail them and wondered what the hell happened when I figured out I didn't have them. It took me a half hour to finally find them in the trash back at home and I had NO recollection of how they got there??? I don't normally experience this kind of short term memory problem except on Rituxan infusion day. Just an FYI.

Last time I did an infusion I didn't feel very good the day after but this time I was just fine although I did take it easy. On Wednesday I went for an easy bike ride followed by a baseball game in excruciating heat, walked at least two miles that day and didn't really experience any extraordinary problems with any of it! I got to say, this therapy has got to be about as easy as it gets.

This one was a tabout 7.5 months after my last one. After I had the "Ageing MSer and potential discontinuation of therapy" talk with my Neuro, which I declined, he called me to persuade me to go to an 8 month infusion schedule because of a gut infection I got shortly after I started Rituxan and because blood tests at 6 months indicated that my B cells had not begun to regenerate. No problem, although I suspect B cells might not be the only thing Rituxan is affecting!

Anyway, this therapy seems to be working pretty well. I suspect most of the problems I continue to have are due to the effects of age on an already compromised neural system and although that's not pretty, I continue to believe that the Rituxan is effectively keeping the MS at bay. I wish it had been brought to my attention at least several years earlier, I might have saved a few more neurons!

Later,

Larry
Glad things are going well. I had an infusion at the beginning of June and did not expect much. My previous infusion last December seemed to not have helped at all but, now I think the December infusion’s benefits were masked by a serious exacerbation. That exacerbation seems to have run its miserable course so June’s infusions put me back on track and I am functioning at a pretty good level in the midst of stressful times. At least I am still farming!
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