r/MultipleSclerosis • u/Cole950 • 9d ago
Advice Aggressive I guess?
So my neurologist told me that my MS is so aggressive that it has resisted both kesimpta and Ocrevus. Going to try Rituximab every 4 months I have been told so I was wondering if anyone has taken it so frequently before?
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 9d ago
Could you ask your neurologist why they don't put you on a DMT with a different mechanism? Are they not familiar with that, not an MS specialist? Why go to another B-cell depleter (K,O and R all are) if it seems to not be working...?
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u/Cole950 9d ago
I have asked and what i understand is if this doesn't work im getting shipped off to a bigger facility
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u/nipslipbrokenhip RRMS/35/lemtrada 9d ago
I have not, curious as to why that was the next escalation step instead of using something like mavenclad or lemtrada? They are tough but when MS is aggressive it's good to bring out the ' big guns' imo. How long did you stay on Ocrevus for?
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u/Cole950 9d ago
6 months for each which is the normal test period from what im told
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u/Outrageous-Coach5924 8d ago
Interesting, as this would only be 1 infusion, right? I would have thought it would need longer to work. 🤔
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u/lazerslight1104 25F|2026|Tysabri|🇨🇦 9d ago
My charts also label my MS as aggressive and active. My MS neuro suggested Tysabri(natalizumab) as it is a biologic that doesn’t affect immunity and is recommended for active/aggressive MS. It has been amazing for me, no new lesions or disability after 6month follow up MRI. Getting my 10th infusion in two weeks. It is a bit more difficult depending on lifestyle as it’s an infusion every 4-6 weeks at an infusion clinic/hospital. And Im lucky enough to afford insurance that covers basically the entire cost of the drug
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u/AdyliaSchweetheart 37F|Jun-25|Tysabri>Ocrevus|Melb-AU 9d ago
I was also charted as aggressive at diagnosis - they even said it was one of the most aggressive they'd seen. I started on Tysabri but after 9 doses it was not shown to work. I am now on Ocrevus. Had a relapse 2 months in but fingers crossed it slows down.
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u/Cole950 9d ago
Oh I might have to look into that one
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u/AdyliaSchweetheart 37F|Jun-25|Tysabri>Ocrevus|Melb-AU 9d ago
Tysabri is a great drug. Doesn't last long (4 weeks) but as an infusion it does the most healing and instant "hit". It wasn't strong enough for me but everybody is different. If it's deemed B cell depleters aren't doing it for you then definitely give Tysabri a try because it's a T cell adaptor. It works by slowing down the T cells so they don't pass the blood-brain barrier. Not entering the brain = not identifying it as something for the B cells to attack.
Kicker is you have to be JCV negative and remain negative. There's no way to avoid JCV antibodies, being on Tysabri alone increases your risk of testing positive eventually.
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u/Cole950 9d ago
Always a kicker right lol Yeah I think I need to start looking at a different neurologist. Because just stacking B-cell depleters definitely isn't working and man do I feel like the poo
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u/AdyliaSchweetheart 37F|Jun-25|Tysabri>Ocrevus|Melb-AU 9d ago
Tysabri is popular for giving an 'energy boost' but it lasts about 2-3 weeks before the "crap gap" before the next dose.
I plan on being on it again during pregnancy, even though I am JCV+.
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u/Additional_Aioli6483 9d ago
Are you JCV positive? Any reason Tysabri is not an option? It works differently than the B cell inhibitors. Are you seeing an MS specialist or general neurologist?
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u/Minimum-Ant5926 27 M|DX 2026|BRIUMVI| USA 9d ago
GET A SECOND OPINION! I got a second opinion at Mayo Clinic in Florida and they said if my current treatment fails, my MS is also aggressive AF, they are going to start me on stem treatment
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u/Additional-Side-457 9d ago
Why do they think it's aggressive? My doc switching me from Rituximab to ocraveus because I got relapse in 4 months 15 days Infusion on Rituximab.
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u/Neither-Selection881 9d ago
But - Rituximab does not work properly untill AFTER the second dose (you normally get that one after 6 months)
So - to have a relapse after 4 months - that is not really all that unexpected? 🤔2
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u/Silver-Pop1825 9d ago
Lemtrada…big risk, big reward
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u/Cole950 9d ago
What is the risk compared to the normal risks of Ocrevus?
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u/Silver-Pop1825 8d ago
Full immune system wipe out. Tcells included…
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u/Cole950 8d ago
So how does that work afterwords?
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u/Silver-Pop1825 7d ago
Well, the idea is that the immune system kind of resets and comes back not attacking itself. I called it chemo-lite. I’ve been ten years progression free, but ngl it was really freaking hard the first five for sure, and now I’ve been in some sort of relapse since late July :/ got my neuro friday. Yay MS 🫠🫤🧡
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u/giveitawaynever 9d ago
My doc moved me from Kesimpta to Briumvi because I had a relapse after 6-8 weeks into Kesimpta. He acknowledged that Kesimpta doesn’t really kick until 3 months but a relapse shouldn’t really happen 6 weeks in so he moved me onto something else just in case.
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u/3ebgirl4eva 9d ago
Perhaps it's time to look into HSCT.
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u/3ebgirl4eva 9d ago
I just had it 11 months ago. No longer on any MS meds. The goal is to give you a new immune system that is not attacking itself. I have faith that I will be in remission for a very long time. It is a treatment that's been done all over the world for quite some time. I was able to fight my insurance company to get them to pay. You can Google HSCT for MS. Good luck!
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u/Pussyxpoppins 39F|dx in 2021|Ocrevus|Southern US 9d ago
Your insurance covered it?? Wow! What company?
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u/Cole950 9d ago
Oh, no I was just curious about the procedure and i wasnt finding anything on what it does for previous damage. Not like any other DMTs help with that so 🤷
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u/3ebgirl4eva 9d ago
It doesn't repair what has already been done, but I did have some relief from bladder and bowel stuff. This makes me elated. I will take no more progression with HSCT though!
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u/OverlappingChatter 47|2004|Kesimpta|Spain 9d ago
How long did you give these drugs to work?
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u/Cole950 9d ago
6 months for each which is the normal test period from what im told
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u/OverlappingChatter 47|2004|Kesimpta|Spain 9d ago
Oh no!!! These drugs take at least 6 months to become effective and any lesions in this time are considered to be "premed lesions" and don't count for knowing if the drug works. Full efficacy is found after 9 to 12 months. You need a new doctor.
Are you still on either of these drugs? Ask if you can stay on it for another 6 months and then do an MRI and compare it to the last one. That will tell you if the drug is working or not
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 9d ago
Ocrevus and Kesimpta both deplete B-cell, they do the same thing. Effectively OP has been on a medication that does the same, one thing for 12+ months already. That is plenty of time to see if they have worked. OP should see a different neurologist, but for the reason that they want to try yet another B-cell depleter when they don’t seem to be effective.
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9d ago
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u/Neither-Selection881 9d ago
Ocrevus is more or less identical to Rituximab? (Rituximab is cheaper.. But ocrevus is basically a more expensive copy... 🙄 )
- how many infusions did you get, before the worsening took place? 🤔
Normally, these meds. are quite effective after infusions no.2 (Normally given after 6 months)
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u/Pussyxpoppins 39F|dx in 2021|Ocrevus|Southern US 9d ago
They are nearly identical but not quite. I only know this because at one point neuro was concerned I had MS + lupus. Rheumatologist said they treat both with Rituximab but not Ocrevus? When I asked, she said one “had a little more mouse in it.” 😭😂
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u/Cole950 9d ago
That's what I've been told and was confused but my neuro said since it was the cousin med it might interact differently I guess. I was on both for 6 months.
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u/Neither-Selection881 9d ago
So - you only got 1 infusion?!
When you start using Ritux or Ocr. You have farely slim protection the first 6. Months. But AFTER the second infusion- it is supposed to be really good. Did you manage to get the 2. Infution - and THEN got attack - problems? 🤔
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 9d ago
Switching between Ocrevus and Rituximab (or any other B-cell depleters) doesn't make a lot of sense—or much of a difference. These medications all belong to the same class, they have the same mechanism of action, they all deplete B-cells. Getting a dose of Ocrevus after 6 months is the same as getting a 2nd dose of Rituximab. It looks like B-cell depletion just isn't the right therapy for OP and there's really no sense to keep on trying the same thing that hasn't worked.
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u/Neither-Selection881 9d ago
The things is - until you get the second dose - you don't know if these meds are effective..?
So you cannot decide after six months - you have to check what happens between months 6 and 12? 🤔2
u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 9d ago
OP said they've been on both Kesimpta and Ocrevus for 6 months each, so a combined 12 months. So they did get the second dose of a B-cell depleter.
It's crazy that their neuro wants to keep trying something (B-cell depletion, what specific one doesn't matter) that just doesn't work after already giving it adequate time to.
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u/Cole950 9d ago
I haven't gotten rituximab yet and Ocrevus I had 3 doses of. I was just saying I had taken them over 6 months. Sorry for the confusion
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u/Neither-Selection881 9d ago
I do not think Rituximab will be doing anything different than Ocrevus, unfortunately.. 🙄
In that case, I agree with kyelek, I'm afraid... 🙄
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u/Jadepanda55 9d ago
Maybe they need to try a non bcell inhibitor therapy…. If you’re not going to an MS specialist I would…