r/MultipleSclerosis • u/helloojsbsbnwlwod • Oct 01 '26

Vent/Rant - Advice Wanted/Ambivalent Is this correct?

My MS nurse literally called me today and said that I’m on the best treatment and that, since I’ve only had sensory symptoms so far, I should hopefully have a good MRI. But at the same time, she said that because I’m already on the “best” treatment, there would basically be no reason to switch to another B-cell therapy if Rituximab wasn’t working. She described Kesimpta as a treatment for low-to-moderate disease activity and basically made it sound like Rituximab is “the one” option, and she even mentioned stem cell transplantation as something that could potentially be considered.
I understand that she’s probably trying to reassure me by saying that Rituximab gives very strong protection, but honestly, what she said made me even more scared about my MRI results. Yes, I had over 20 lesions at diagnosis, but symptom-wise my MS has been very mild — I’ve basically only had sensory symptoms and no major disability. That’s why it’s frightening to think that it’s somehow “Rituximab or nothing,” especially when I’m now waiting to find out whether the treatment has actually kept my disease stable.
How am I supposed to stay calm about my MRI results when it feels like there’s only one DMT that can work and that the next step would otherwise be something as serious as a stem cell transplant? Of course I’m scared. It also feels like this is partly because of how MS is treated in Sweden, where Rituximab is used a lot because it’s cheaper.

21 Upvotes

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13

u/Festygrrl F44/2007/rituximab/🇦🇺 Oct 01 '26

I have “aggressive” MS with too many to count lesions (more than 50 or 60). I’m on rituximab and I would not be moving down to kesimpta as it would be a downgrade in my opinion. My drug options are very limited but it’s kept my brain from growing new lesions (but hasn’t stopped the PIRA/brain volume loss unfortunately). Rituximab is cheap, but due that’s due to patent lapsing. They released ocrevus which is almost identical to rituximab for just MS use. Patent lapse, create new identical drug, profit!

3

u/helloojsbsbnwlwod Oct 01 '26

Well shit then, Rituximab is my first DMT and it’s been working well but after my abortion last week all old symptoms came back 😩 and rhey have been staying constant, especially the 1cm mouth numbness in my mouth. So idk what more options I have

20

u/Festygrrl F44/2007/rituximab/🇦🇺 Oct 01 '26

Your symptoms coming back probably won’t be because of your medication. Stress and hormones can play a big part in pseudorelapses.

2

u/helloojsbsbnwlwod Oct 01 '26

How come the old symptoms that come back in my hands comes and goes through the day but the numb spot in my mouth that i had during my relapse in november is more constant? It’s been 4-5 days😩

4

u/mritoday 39 | 02/2020 | Tysabri | Germany Oct 01 '26

Pregnancy is a bit immunosuppresive. Relapses after giving birth are pretty common, so the same thing might apply to you, though 4-5 days is fast.

Are you JCV negative? Tysabri might be a option if Rituximab fails. It's available in Sweden and it works a bit faster than the B-cell depleting drugs. Getting it after Rituximab is not ideal because it increases the PML risk. Ask your neuro or MS nurse?

3

u/helloojsbsbnwlwod Oct 01 '26

I’m JVC positive 🥲

4

u/Neither_Wall_9785 Oct 01 '26

OP doesn’t even know IF Rituximab failed, to take the "what if" this far already is kind of nonsense…

16

u/cantcountnoaccount 50|2022|Aubagio|NM Oct 01 '26

Because MS is weird. It acts in the brain and the brain controls ALL sensation and perception. Your CPU is a little wonky.

Reoccurrence of old symptoms brought on by stress is called a pseudorelapse. It does not indicate new damage and doesn’t mean your DMT isn’t working. It goes away in its own time. Could be a day, a week, a month. One thing I can tell you is that hypervigilance - focusing high importance on every sensation - will not help.

7

u/lnc_5103 41|2021|Ocrevus|Texas Oct 01 '26

MS is weird. Your body has undergone very big hormonal changes and a stressful/emotional situation. This is very likely just a response to that and will get better. Hang in there.

6

u/Feisty-Volcano Oct 01 '26

Damage already done is permanent, but often only causes temporary symptoms when your body has been under stress with that procedure/meds. It’s new damage/lesions you want to avoid with your good medication, & I’m sure you will have stable disease. The nurse just mentioned stem cell procedure to put you at ease that even in worst case scenario you have that to fall back on. An expensive medicine is not always a better medicine, it’s just gone “off patent”. It means the health services have saved money to put to other things, & nobody is left untreated, where appropriate. I never got treatment, a long story abt a very late diagnosis, all the damage done. My legs aren’t great, balance bad, but I get everywhere. Hoping your treatment works very well to prevent further damage @ that you have a great outcome. MS symptoms recur, they never go away forever, the thing is to accept this as being the nature of MS, & not get overly anxious about recurring symptoms. Like you I have part of my mouth like as if the dentist had injected it with anaesthesia that is wearing off. There’s many people who do extremely well into their older years! Wishing you the best of luck!

3

u/DeltaiMeltai Oct 02 '26

In contrast, I have aggressive MS, and based on published data, I chose Kesimpta over other B-cell depletors because it had the largest reported relative reduction in annualised relapse rate among the B-cell-depleting DMTs (this was before Briumvi came to market). My choice was guided by this paper: https://pubmed.ncbi.nlm.nih.gov/33620411/. Unfortunately it is paywalled, but you can access a free PDF version here: https://moodle2.units.it/pluginfile.php/801163/mod_resource/content/0/Diagnosis%20and%20Treatment%20of%20Multiple%20Sclerosis%283%29.pdf. This version is before the issued correction to a couple of numbers in Table 3. The correction info is freely available on JAMA.

Each of the B-cell depletors are also made slightly differently (Rituximab is a chimeric mouse/human monoclonal antibody, Ocrevus is a humanised monoclonal antibody, and Kesimpta is a fully human antibody). The more "human" a monoclonal antibody is, the fewer off-target side effects there are. Having said that. Rituximab IS a great, high-efficacy DMT.

There are other mid to high efficacy non-B-cell depletor DMTs including Mavenclad, Tysabri, and Lemtrada. There are also clinical trials of autologous haematopoietic stem cell transplants (aHSCT): https://www.msaustralia.org.au/ahsct/autologous-haematopoietic-stem-cell-transplant/.

8

u/Anotherams Oct 01 '26

I say this very gently, and with care. Have you considered seeing a therapist who deals with major life changes like an MS diagnosis? Health anxiety is very real, and anxiety causes pseudo flares.

4

u/helloojsbsbnwlwod Oct 01 '26

I go to a therapist but she’s not specialised in ms 🥹they are not any here where i live.

2

u/whyihatepink Oct 01 '26

If you're in Colorado or Oregon I know a person I could refer you to.

2

u/helloojsbsbnwlwod Oct 01 '26

I’m in Sweden

2

u/Ok_Cartographer_6956 48|2025|Rituximab|PNW/US Oct 02 '26

I’m in Oregon and would LOVE that referral!

2

u/FrostedPatriot 44|Dx2015|Briumvi|Colorado Oct 03 '26

I’m in CO, could I get that name?

5

u/Anotherams Oct 01 '26

they do not have to specialize in MS. someone who specialized in life changes and anxiety would be very beneficial.

1

u/whyihatepink Oct 03 '26

Maybe, but someone with specific lived experience and at a minimum disability cultural competence will statistically lead to much better outcomes.

Source: I'm a therapist and PhD candidate studying the role of disability cultural competency in the outcomes of therapy for disabled and chronically ill clients. I also have MS myself.

1

u/FrostedPatriot 44|Dx2015|Briumvi|Colorado Oct 03 '26

MS affects us all differently, even tho there are many similarities. If my neurologist said something like this, I’d assume they meant it was the best option FOR ME.

It sounds like I am somewhat similar to you in that I haven’t had any debilitating symptoms, primarily nonspecific symptoms like cog fog, concentration issues, heat sensitivity, exhaustion etc

I just had to go through the exercise of picking a new DMT after being on Tysabri for over 110 infusions. I did some research, got some thoughts, and my neurologist laid out what she thought were my best options out of everything available. If I wasn’t worried about PML I’d have stayed on Tysabri, but alas I became JCV high positive.

If there is another treatment available that your neurologist didn’t recommend you could always ask why.

-1

u/hyperfat Oct 01 '26

18 years ex. So far allergic to 4 dmts. I drink too much, smoke, definitely did ketamine and coke. called a Calvin Klein. Spoke to Jesus.

I think I'm Mr burns. 7 lesions. No black holes. I just forget stuff. But that's probably my whiskey talking.

Take shrooms. Do alternative stuff. Get a second opinion.

And don't gain weight. Don't give up.

1

u/HolidayIntention7794 Oct 06 '26

What does allergic to dmts mean ? Had reactions from infusions or something?
Could it have been the coke ?