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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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  #47  
Old 09-15-2019, 08:16 PM
MSLazarus MSLazarus is offline
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Default So, it is about 2 months later than my previous post on this thread.

I functioned extremely well. There has been a lot of stress this summer as my husband had a tough summer and I was responsible for the farm. A lot of the crops did not make it but a lot did! I dug every potato we have sold. I kept the greenhouses watered and that is no mean trick! I kept creating new plants so we both have product to bring to the outdoor markets that go through November.
I am still plagued with chest spasms and esophageal spasms and blistering leg cramps have become a new problem as well as sharp but very quick electrical pricks that crop up and hurt...but only for a second. So, there is some progression in the last two years which is speeding up but....I am so damn strong!
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  #48  
Old 10-08-2019, 05:59 PM
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ActiveMSers ActiveMSers is offline
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Here's a just-released study... -D

Treatment of multiple sclerosis with rituximab: A multicentric Italian–Swiss experience

Chiara Zecca*, Francesca Bovis*, Giovanni Novi, et al.

First Published October 1, 2019 Research Article
https://doi.org/10.1177/1352458519872889

Abstract

Background:
Rituximab, an anti-CD20 monoclonal antibody leading to B lymphocyte depletion, is increasingly used as an off-label treatment option for multiple sclerosis (MS).

Objective:
To investigate the effectiveness and safety of rituximab in relapsing–remitting (RR) and progressive MS.

Methods:
This is a multicenter, retrospective study on consecutive MS patients treated off-label with rituximab in 22 Italian and 1 Swiss MS centers. Relapse rate, time to first relapse, Expanded Disability Status Scale (EDSS) progression, incidence of adverse events, and radiological outcomes from 2009 to 2019 were analyzed.

Results:
A total of 355/451 enrolled subjects had at least one follow-up visit and were included in the outcome analysis. Annualized relapse rate significantly decreases after rituximab initiation versus the pre-rituximab start year in RRMS (from 0.86 to 0.09, p < .0001) and in secondary-progressive (SP) MS (from 0.34 to 0.06, p < .0001) and had a slight decrease in primary-progressive (PP) MS patients (from 0.12 to 0.07, p = 0.45). After 3 years from rituximab start, the proportion of patients with a confirmed EDSS progression was 14.6% in the RRMS group, 24.7% in the SPMS group, and 41.5% in the PPMS group. No major safety concerns arose.

Conclusion:
Consistently with other observational studies, our data show effectiveness of rituximab in reducing disease activity in patients with MS.
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  #49  
Old 10-22-2019, 01:09 PM
AMFADVENTURES AMFADVENTURES is offline
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Default FYI: Generic Rituximab?

FYI, I just received notice from my HMO that the "FDA has approved a new biosimilar medicine to Rituxan called Truxima, which has the same active ingredient and treats your neurology condition (MS) the same way as Rituxan." They claim the safety, purity, potency and effectiveness are equivalent. They didn't say anything about cost but I'm assuming it will be cheaper. I guess I'll find out the next time I go in for an infusion.

Good. I'm all for cheaper treatments for this disease and I do expect this drug to be every bit as good as the original Rituxan. Anyone else get this notice yet?

Larry

Last edited by AMFADVENTURES; 10-23-2019 at 12:50 PM.
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  #50  
Old 10-22-2019, 08:52 PM
Suebee Suebee is offline
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I'm waiting for clearance to start Orceveous. I'm excited for possibility I will feel better on this DMD. Are rituximab and oreceveous related? Does anyone know how they are different?
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