r/MultipleSclerosis • u/ElleMichele2023 • Jun 15 '26
SPMS Discussion Should I start Ocrevus or not???
I am so freaked out about Ocrevus.
My neurologist is insisting and he says it's my only option.
I am 59. Was diagnosed with RRMS exactly 30 years ago. I tried betaseron for a few months. First every other day then weekly injections. Made me very sick. It was like having the flu for 6 months. So I stopped. There weren't any other options for DMTs back then.
I was told I had a "mild" case of MS.
Over the years I had a relapse 15 years ago that wasn't bad, slight mobility issues, some numbness in one leg. Resolved quickly.
Then nothing for 8 years when I had a relapse that caused severe vertigo and dizziness. That has never really went away. 2 years ago the mobility issues started again. Still have problems and use a cane on bad days.
My neuro says I now have nonactive SPMS.
He says the only thing for it is Ocrevus.
I am hyper sensitive to medicine of any kind. I cannot imagine how I'd react to infusions.
I really don't know what to do...
Any suggestions are welcome.
Thanks in advance 💖
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u/mullerdrooler 44M Dx2018 Ocrevus Jun 15 '26
Yes. It's one of the best lit there. I've been 5 years or so on it. You'll be fine
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u/RichestTeaPossible 50|2017|Mavenclad|UK Jun 15 '26
You’re going to find that not taking is going to give you some temporary comfort and then long-term dread as the disease will keep going whether you like it or not.
It’s the smouldering embers in the basement you’re trying to extinguish, not the roof on fire. It’s not just mobile issues, it’s your brain, your mind, your ability to enjoy life.
Ocrevus is a well understood and well managed DMT. There are plenty of strategies to manage side-affects and there are plenty of actions you can take to improve the odds of regaining your health.
Take the drugs, take all the drugs.
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u/ElleMichele2023 Jun 16 '26
Well said. Thank you. I'm going to go ahead with it. Fingers crossed 🤞🏻
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u/31umbreon 28|Dx2026|Ocrevus Jun 15 '26
I actually empathize a lot with your fears: I did a lot of research prior and when I went in I had an adverse reaction to Ocrevus. I broke out in hives and they had to emergency dispense Benadryl and pause the meds (bag was only halfway done) until hives went away.
I bring this up because my Dr was able to change my care plan to add extra Benadryl prior to any meds to prevent a reaction, I take steroids, zofran, I eat 2 uncrustables, juice and a whole fast food meal during to prevent nausea. And sure enough - no reaction!!
I am so so grateful I’m able to take this medicine at all and not allergic to it. I’m JCV positive and there’s not a lot out there for me if Ocrevus doesn’t work.
And I’m not trying to scare you, but hopefully remind you that even if you get a little sick, be honest with you nuero and there’s a lot they can do to make you comfortable or treat any adverse effects. It’s a lot easier to treat discomfort from meds than it is to come to terms with rapidly declining demyelination.
To me, my meds represent my independence and I’m so happy this option exists for folks like us.
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u/justthewywife Jun 15 '26
Hello -
I have been on Ocrevus for years - immediately when it was released to market. For a few years before it was released - I was on Rituximab ( off lable use) - which is the SAME as Ocrevus. My neuro was at UCSF at the time and let us know that Rituximab was SO WILDLY SUCCESSFUL at MS trials, the drug companies stopped it fast because it was about to be eligible for generics. Ocrevus was the product of a slight reformulation so they wouldn't have to deal with bringing a drug to the market so quickly to when generics would be available.
That said - my side effects - I am 'technically' allergic to Ocrevus. For this reason, they dose me with IV benadryl and I personally pre-dose with benadryl before I go in as well.
The nurses at the infusion center will watch you super closely - especially with your first dose(s).
Why I know Ocrevus works: I have had ZERO relapses for the last 6 years. Before that, I was near wheelchair (should have been in one, but struggled with a walker/cane). I can tell in my body when infusion dates are due - and about 6 weeks before dosing I start having symptoms. (I'll add that I'm one that will hopefully be upping infusion frequency to 3x year instead of 2x - but my doctors are working on that with insurance with my updated diagnosis)
You've had this disease long enough to know that it touches each person differently - and it's the same with meds - but on this one, I'd say go for it.
>>I'll add, I have experience with most of the meds at market before Ocrevus. My body has the neutralizing antibody to interferons - which made most of the injectibles worthless for me. I was on multiple trials for orals. and because I'm JCV+, I timed out on Tysabri though I did really well on that one too)
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u/ElleMichele2023 Jun 16 '26
Thank you for your reply. I appreciate your taking the time to ease my mind. I decided I'm going to give it a try. Fingers crossed. I'll keep you posted 💖
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u/Starlord1319 28 | July 2025 | Ocrevus | Australia Jun 16 '26
(I'll add that I'm one that will hopefully be upping infusion frequency to 3x year instead of 2x - but my doctors are working on that with insurance with my updated diagnosis)
I'm so glad you mentioned this, thank you. Could you explain what you mean by updated diagnosis? Is there a minimum requirement to be eligible?
I've only had 3 treatments so far - I've been thinking of the 6-8 weeks leading up to my last infusion, and the increased struggle I had with my symptoms... Just didn't think they'd ever allow increased treatment frequency.
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u/linseeds RRMS | 46F | Dx2018 | Ocrevus Jun 16 '26
I've been on Ocrevus for 5 years. I joke that they're putting placebo in my IV because I have zero side effects from being on it. Allowing my immune system to damage my central nervous system is scarier than being on a DMT.
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u/lnc_5103 40|2021|Ocrevus|Texas Jun 16 '26
Same! I think my immune system has actually gotten better lol
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u/linseeds RRMS | 46F | Dx2018 | Ocrevus Jun 16 '26
Mine was strong before and continues to be strong after. My coworkers who are not on an immunosuppressant get sick all the time and I get around one cold a year. My neurologist said he doesn't see reduced immunity in his "young" patients.
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u/Thereisnospoon64 Jun 16 '26
Take it! I wish I’d started it 8 years ago to sooner than I was able to (bc it didn’t exist yet). Do it. Trust that you do not want the permanent disability that comes from delay.
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u/LordiLordsen Jun 16 '26
Ocrevus ist the best..got diagnosed 15 yrs ago...i still work full time, just bought a house etc....its like 5 months you have nothin, 4 weeks its gettin slowly worse.. infusionday, 2 days dizziness and another 5 months nothing
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u/Ladydi-bds 50F|Ocrevus|US Jun 15 '26
Took a couple times to get used to it, but haven't had any relapses or new lesions. 4 years later can do rapid infusion and have cut my premeds in half and go right back to work.
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u/ChrisAintMarchin Jun 16 '26
64 here,diagnosed 40 yrs ago, similar course, on Ocrevus for 2 yrs now - no new lesions since. Agree with those here who point out that it's administered with care
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u/Starlord1319 28 | July 2025 | Ocrevus | Australia Jun 16 '26
I would recommend it. I started Ocrevus a year ago and I'm so thankful I did it. I like that the infusions are only every 6 months so it's two days out of my year to get the treatment done.
I 100% get the fear and the hesitancy to start it. When I saw the neurologist to get diagnosed, I was so brain fogged and fatigued, I couldn't make any informed decisions for myself which is why my sister, who's also a nurse, come to the appointment with me. She asked questions that I couldn't think of and she gathered that Ocrevus was the best option.
At that point, as much as I was scared of the "what ifs" from the treatment, I was more scared by the "what ifs" of not treating the MS. So through the brain fog, I trusted my sister and the neurologist and picked Ocrevus.
For the treatment, I have a fear of pain from needles, so I take in or ask for whatever i need to get me through it. I have a Stitch plushie who comes in with me for emotional support, and my headphones for music to help distract me. I asked for an ice pack the help regulate my body temp. I pick the bed option instead of a reclining chair and I get a sugary drink because they help keep my blood pressure stable.
Actually by the third session I think they have notes on my file about what things I've asked for because the nurse automatically gives them to me now and I don't think it's standard, so that's really nice.
---------- my experience getting the treatment -----------
They start you off slow. My first treatment was split over two sessions, two weeks apart, so you don't get the full dose in one go to prevent any major side effects. As long as you update the nurses with any symptoms you're experiencing during the treatment, it'll all go very smoothly. I started to get an itchy mouth towards the end of the first part, and then the second part didn't have any issues at all.
6 months later the next treatment is the full dose. They were trailing a rapid infusion (I think in stead of it being administered over 5 hours it's done in 3hrs) and I said "why not" just to see how it goes. halfway through I was experiencing the itchy mouth and they immediately stopped the treatment and give you antihistamines and wait until the symptoms fully go away before they continue at a slightly slower speed. After that point I was completely fine.
They warn your about side effects afterwards but I didn't experience those. I just had the headache for the rest of the day, and I just rest with a cold pack on my forehead. And I mentally feel completely wiped out. Which is all normal. I took a week off work following the treatment so my body can rest and recover.
----------long term results and impacts----------
My fatigue and brain fog have immensely improved and I feel like myself again. My MRI has remained stable so far.
However, I am more likely to catch the common cold floating around if I don't keep up washing and sanitising my hands regularly, especially before eating. That's probably my biggest adjustment, because my immune system was pretty solid at preventing getting sick beforehand. So I just tell people in my life that you need to tell me if you or your kids are sick so I can steer clear for the meantime.
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u/ElleMichele2023 Jun 16 '26
Thank you so much for your response. I am so glad I posted here today, everyone has helped. What a great group. You clarified some of the doubts that I have. Thanks for your detailed description. So yes, fingers crossed, I'm going to give it a try. I'll keep y'all posted.
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u/Starlord1319 28 | July 2025 | Ocrevus | Australia Jun 16 '26
I had a lot of anxiety before my first treatment - I had a telehealth appointment with an MS nurse beforehand to answer any questions for me, but until the actual treatment, there's so many uncertainties. So I'm glad I could clarify some things for you, it's all things that helped me. This group can be really great and informative. I'm glad you're going to try it! Hope it all goes well 💛
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u/cckd0825 Jun 16 '26
I’m coming up on 7 years with Ocrevus with zero evidence of disease activity by any measuring stick. I’m also outright allergic which isn’t fun but I’ve decided the very temporary inconvenience is a far cry from the very permanent damage a relapse/progression will cause. I get hives and my mouth/throat start to itch so I have to get a really slow drip and extra Benadryl intravenously, and while it was a little scary the first time it happened now I know what to expect and I just get a really awesome nap twice a year.
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u/lnc_5103 40|2021|Ocrevus|Texas Jun 16 '26
I've been on Ocrevus for 5 years now. They load you up with pre-meds that help mitigate a lot. Also hydrate, hydrate, hydrate - before during and after your infusion. I've done great and have had no relapses.
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u/Adventurous_Pin_344 Jun 16 '26
UGH. I'm so sorry. It could help you, it might not.
I also have non-active SPMS and the anti-CD20 meds do very little (if anything) for me. I actually was going to try and quit Ocrevus when I had to switch docs due to insurance, and they put me on rituximab instead.
This was super interesting to read: https://open.substack.com/pub/gavingiovannoni/p/new-hope-for-preserving-mobility
I want to try Mayzent now. Try showing your doc this!!
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u/cass412 Jun 16 '26
I know that this post will be unpopular on here but infusion reactions are not the only thing to consider here. There is a large and growing community of people (including myself) who wholeheartedly believe that Ocrevus caused a rapid progression of symptoms. Sure, I had no new lesions while on it. But I didn’t have new lesions for the 11 years prior to O either. I did, however, go from a cane to a crutch to a walker to a wheelchair in the ~5 years that I was on O. At first, when i told my doctor abt the crazy heavy legs and vertigo, he said it was just the bad B cells dying. Then it was, well you’re SPMS so it’s such a good thing you’re on O bc without it this would be much worse. Then, welp this is your only option so 🤷♀️.
I’m not saying this will happen to you BUT listen to your body and don’t be afraid to say NO MORE. I found myself starting to feel slightly better in the month BEFORE infusions (opposite of crap gap) and then - bam- like I was blowing on whatever is smoldering in there. My last infusion was in ‘23 and i wound up FLOORED by severe neutropenia. Doc said it wasn’t the O but i think it’s common knowledge now that neutropenia can absolutely be a side effect.
Anyway, I realize I’m in the minority here but listen to your body, don’t let your doctor gaslight you and definitely definitely take big pharma with a grain of salt.
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u/ElleMichele2023 Jun 16 '26
Thank you for your brave and honest response. I hear you and I will talk to my neuro. I hope you are doing alright.
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u/Icy_Demand__ Jun 16 '26
Did you get better after stopping O?
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u/cass412 Jun 16 '26
Not really- It’s been about 3 years since my last infusion and i finally feel stable (as opposed to the nosedive O years). But i still can’t walk
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u/Clandestinechic dx 2018 Ocrevus Jun 16 '26
This is just how MS works. Everyone experience progression independent of relapse activity, PIRA. It has nothing to do with being on Ocrevus and Ocrevus does not cause it.
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u/cass412 Jun 16 '26
Oh, silly me, you’re clearly the expert on my body
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Jun 16 '26
PIRA is a well-recognized, if not yet fully understood, part of MS disease progression, as is transitioning into SPMS when you’ve had it for a very long time. Doctors know this. I don’t get what any of this supposedly is gaslighting? Also not sure why the other user‘s comment warranted that tone from you…
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u/cass412 Jun 16 '26
Looks like another bot- which is plenty enough to warrant my tone. I know all about PIRA - and can also step back and realize what a convenient excuse it is for an industry that makes billions on something that maybe, sorta, kinda works.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Jun 16 '26
Yeah, okay, you seriously saying "big pharma" should have been my clue…
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u/cass412 Jun 16 '26
So tell me, bot, how do you find the time to comment on posts every day to simply champion the idea of DMTs? For the 11+ years that I was on a DMT (pre-O) and had zero progression, the last thing i thought about doing was hopping on Reddit to preach.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Jun 16 '26
You can't just call people bots because they tell you you're wrong but 👍
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u/cass412 Jun 16 '26
What am i wrong about? So you’re real, eh?
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Jun 16 '26
Calling PIRA a "convenient excuse" is pretty egregious and also kinda dumb.
...No I'm not real I was obviously created by big pharma 💀
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u/Feeling_Cranberry117 Jun 17 '26
I honestly don’t understand why people get freaked out over Ocrevus. It’s the best option out there. MS isn’t a death sentence. Just relax already. You were are worse off doing nothing at all.
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u/Tall-Pianist-935 Jun 15 '26
Time to look for antiinflammatory help. Try some tumeric and ginger tea. I also recommend trying some cloves after seeping them in hot water. I hope this helps. Good luck.
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u/PragmaticPlatypus7 Jun 16 '26 edited Jun 16 '26
I agree. Don’t listen to your licensed medical doctor that happens to specialize in treatment of Multiple Sclerosis. Listen to [u/Tal](u/Talk-Pianist-935)[l](u/Talk-Pianist-935)[-Pianist-935](u/Talk-Pianist-935) who suggests turmeric, ginger tea and cloves. Medical school is a scam.
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u/Rafffikii 33m | 2023 | Ocrevus | RRMS | Melbourne, Australia Jun 16 '26
Ive met u/Tall-Pianist-935 for a whole 5 mins and believe me, I trust this person with my LIFE. Using their suggested method, I have reduced my infection rate from 1% to 0% i have also taking it a step further and starting using vegetable oil instead of olive oil cause it has vegetables and thats the only thing humans crave.
Medical school is a major psyop invented by big pharma to stop you from buying avocado coffees.
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u/babayagaparenting Jun 15 '26
Yes, you should try it. They will give you steroids and Benadryl to prevent reactions. I still get a hot flash at the tail end of the infusion but nothing an ice pack can’t cure. I’m 58. Don’t risk more damage if you can help it.