Rituximab Therapy

[MSLazarus]

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!

[MSLazarus]

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!

[ActiveMSers]

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.

[AMFADVENTURES]

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

[Suebee]

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?

[AMFADVENTURES]

Hey Suebee, my understanding is that they are essentially the same except Rituximab is derived from animal cells and Ocrevus is derived from human cells.

Because Ocrevus is derived from humans, some studies indicate it may be less likely for the recipient to develop an immunity to it, possibly making it the better choice although the action of both drugs on the B-cell is the same, ie; the antibody in the drug attaches to the B-cell immediately deactivating it and eventually causing B-cell death. Hope that made sense and good luck, I hope it works well for you.

Once you get started I hope you will stay with us. This thread appears to help other MSers make the DMT decision.

Larry

[AMFADVENTURES]

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?

Turns out that is really an interesting question Suebee. Truxima is considered a "biosimilar" to Rituxan. The pathway through FDA approval for a biosimilar is significantly reduced from that of a new drug but the approved usage of the biosimilar cannot exceed that of the original.

Ocrevus underwent the full FDA approval process because the application specifically included MS, something Rituximab nor Truxima have ever been technically approved for. Based on that I wonder if Ocrevus isn't actually a biosimilar to Rituxan also but it received "new drug" certification (and the associated higher price) because it underwent the full FDA certification process?

It may all just be trivia, but it's interesting trivia! I also haven't figured out what Truxima is derived from, that information doesn't seem to be readily available. I've fired off some e-mails and if I get an answer I'll be sure to let you know.

Larry

[AMFADVENTURES]

So I got a response back from MSAA about 20 minutes after I sent an inquiry. IMO, Those people really are the go to source for PWMS.

Anyway, this article, referred by MSAA, seems to specifically addresses your original question.

https://multiplesclerosisnewstoday.c...ents-concerns/

I still don't know the derivation of Truxima but I'm leaning toward animal as opposed to human.

Larry

[MSLazarus]

All very interesting

Timothy Volmer used Ocrevus/Rituxan just like that. He said they were the same. The deal was that the company was losing its patent on rituxan so it tweaked something, called it Ocrevus, and kept charging a high price. Rituxan was much cheaper. So this news is very interesting. Thanks.

[Suebee]

AM and MSlaz , thanks for you feedback and article. It had good overview of issues. I remembered there was a connection and controversy about the 2 drugs, but not any of the details. I cleared all the blood tests for healthy organs and no hepatitis and other viruses which would be become dangerous under immune suppression. Because of the cancer risk, I took it upon myself to get a mammogram screen and other screens for women (I.e. pap), and skin biopsy from derm. I also made effort to let each of my drs know I’m intending on taking orecvous soon and I wanted each office to share and review all my lab work. This integrated medicine or team approach I find the most challenging. My MS involves many disciplines and I believe each specialist gets too focused on that one specialty and doesn’t look at the whole person. My neurologist agreed he wouldn’t start orcevous until he actually reviews my mammogram screen BUT he didn’t suggest or mention it before I did. He’s an excellent neurologist and it shows he is very receptive to my plan to make sure I’m ready for this drug, but it also underscores how one needs to self advocate and truly understand the risks one is undertaking with a DMD. Neurologist going to file insurance request papers after screen and another round of blood work. I’ll keep you updated. Thanks for your support.

[MSLazarus]

Thanks for your story SueBee...

I am happy with rituxan. I am 72 now but am getting new symptoms which is irritating. I am a farmer and don't like it when the schedule is interrupted! (That means somebody has to do my work).

Right now we are thinking that I am having attacks but they would be even worse without the rituxan. I get well again and go on doing physical work pretty much as usual.

I am falling almost once a day and chest spasms are pretty intense. However, you should see all the fingerling potatoes I have dug!

Thanks everyone for information.

[AMFADVENTURES]

Hey Linda, sorry to hear the MS is acting up, falling that much is not a good thing! Are the chest spasms like a cramp? If they are, here's something you might try, I'd give it a slim chance of working. Mustard! Like from a fast food packet. Put a little on your tongue and swish it around in your mouth. The vinegar in the mustard hits a trigger point on the tongue which immediately causes the cramp to release. A non MSer friend of mine who is prone to crippling cramps while cycling swears by this. Consequently I now try to carry mustard with me when I go for long rides, just in case.

I don't recall ever having seen a study concerning long term effectiveness of Rituxan so now you have me wondering? I feel the same way you do, that my MS would be much worse without the drug but I too wonder if it's effectiveness might wear down with long term repeated use. I just posted news about an upcoming RMMSC Summit to be held in Denver on November 9th. Dr. Vollmer will be there and they have normally taken questions submitted in advance for Dr. Vollmer to address at the end of the session and the Long Term Effectiveness of Rituxan sounds like a good one!

I wasn't planning to go to this conference but perhaps now I will as I'm not sure whether or not you have to be present to submit a question. I'll let you know what happens.

Suebee, couldn't agree more about self advocacy and you certainly seem to have it under control. The only other thing I can recall my Drs. recommending before I started infusions was to get current on vaccinations.

Again, hope it works for you,

Larry

[MSLazarus]

Great...I hope you go

I saw Vollmer sometime around 2001. I saw him several times as he and my own neurologist were trying to figure out my next step. He is great.

Several years later I saw him at a conference and asked a question and mentioned that I had seen him several years earlier. He said that he remembered me. I told him that of course he did not remember me but I remembered him! He laughed heartily because it was true. But he had a huge impact on my treatment for a decade.

Almost everything I have taken wears off and becomes ineffective. But I have been helped by everything.

My chest spasms are extremely painful...as if I were having a heart attack. Does not feel like cramping. But that info on cramping is unique. I will pass it on to a friend.

[MSLazarus]

knowjust to be clearer...

I have done my major meds for many years before they wear off. Betaseron when it came on the market...IVIg for another 8 years. (170g every other week)....novantrone for the allowed limit...have been on rituxan for many years now...and yesterday was a harsh physical day on farm and I barely crawled into bed at 6 last night but here I am, it is around 7 the next morning, and I am moving and alert. That is the rituxan which I do squeeze the last drop of goodness from! My next infusion is in December.

[Suebee]

MS L, thank you for sharing your experience and your perseverence. I get strength and courage from this forum, and visualizing you farming pushed me to complete some of my important domestic mom suburban tasks. thank you.
BtW i also have chest pain but not cramping. It is real squeezing/ or pressure. It fluctuates and can be severe. No real answers from drs. Some rib cartilage is inflamed on films. I think drs see it as anxiety driven, but overtime I trusted myself, it has another cause. I blame MS malfuntion nerves, but no diagnosis particular to chest pain. Did doctors explain to you why it happens?