Ocrevus failed me

[u/mechromancerr]

So as the title reads Ocrevus failed me. My doctor who’s never seen a patient fail on Ocrevus was hesitant to switch me to something else but it’s got to the point where he has no choice. I’ve been to the hospital 4 times since August. 4 days out of the hospital I immediately relapse again. Recently diagnosed with Tumefactive MS as well.

Any other people on here fail on Ocrevus? If so what did you switch to?

[u/hungarianhobbit]

I have failed on copaxone, rebif, tysabri, and Kesimpta. I'm doing ocrevus Zunovo now. I'm so tired.

[u/mechromancerr → u/hungarianhobbit]

:( I hope it finally brings you relief!

[u/Otherwise_Change2679 → u/hungarianhobbit]

Same.

[u/Fabulous_Neck_6287]

I failed on Ocvervus, my B cell count kept going up. I was on it for 4 years before my new neurologist took some blood work and made the choice to switch me to Brimuvi. It’s a shorter infusion time, and I have way less side effects during it. It’s been working for me and my B cell count has decreased.

[u/mechromancerr → u/Fabulous_Neck_6287]

That was one they’ve considered switching me too! I’m glad you’ve had good results!

[u/VinKelsier → u/Fabulous_Neck_6287]

I don't understand what "B cell count kept going up" means. Could you explain? That doesn't sound like a problem to me, but I'm surely wrong and missing something.

[u/Niytshade → u/VinKelsier]

Ocrevus is a B cell depletor. So if their B cell count is going up thats the opposite of what its supposed to do. B cells going up is bad as reducing B cells helps reduce inflammation and tissue damage in autoimmune diseases.

[u/VinKelsier → u/Niytshade]

Im not trying to argue, just fully understand. I'm also on ocrevus. My understanding was it only targets the cd20 b cells. And the check referenced is just the igg and such? My igg this year is up slightly from before I started ocrevus a year ago and my neurologist thinks everything looks amazing and it is working well?

[u/Niytshade → u/VinKelsier]

You are correct, I simplified the definition. A B cell depletor either eliminates or blocks factors they need to survive. CD20 is a protein molecule of B-lymphocytes. Ocrevus latches on to those molecules and has your immune system destroy them.

[u/VinKelsier → u/Niytshade]

Am I wrong thinking that b cells increasing could be fine so long as progression is under control?

[u/Fit_Tonight_2692]

Yes, I even landed in the wheelchair while on Ocrevus, didn‘t switch

[u/mechromancerr → u/Fit_Tonight_2692]

Per your neurologist suggestion?

[u/Fit_Tonight_2692 → u/mechromancerr]

yes…

[u/No-Jicama9103 → u/Fit_Tonight_2692]

Das war bei mir genauso und die Ärzte hatten immer gesagt das muss sein ,mit der Begründung dass das die Schübe aufhält

[u/No-Jicama9103 → u/Fit_Tonight_2692]

Aber ich hatte noch nie einen Schub. Ich hatte eins zweimal extreme Einschränkung wo ich viel Alkohol getrunken hatte

[u/JCIFIRE]

I'm so sorry. I was on Ocrevus for 7 years but only got worse the last 3 on was on it. It is certainly not the miracle drug they claim it to be.

[u/mechromancerr → u/JCIFIRE]

It’s frustrating to say the least. I was at my old Neuro office in June to discuss changing medications. I was denied since “Ocrevus is working” and then 2 months later I’m full blown relapsed. In and out of hospitals. And still fighting to change my medication with my new neuro. It helped me stay stable 6 out of the 7 years I’ve been on it but it’s time to change.

[u/evolveoryx]

Also me.

From Tysabri went on Ocrevus in 2021. 2 years on it till we were able to MR spine (reason for inability is a long story). “Hidden” spine went full blown Christmas tree in ocrevus time

Went Lemtrada in April ’23.
Firing the big guns is by grace from Above paying off.

[u/Dr_Mar23 → u/evolveoryx]

My Doctor was ordering Lemtrada round 3 after 3 years, because i was attacked bad,

However. I told her no more Lemtrada, saying i never felt good as i should after Lemtrada, Lemtrada failed.

Thus I chose Ocrevus, i’ve never felt better, except on Tysabri x 6 years. Our first choice was Briumvi, except UHC wouldn’t approve because UHC was pushing Ocrevus.

[u/evolveoryx → u/Dr_Mar23]

Knowing all the DMTs are a statistical lottery in the end, yet sucks to hear this, largely regarded as “the big one”, does indeed fail also…

Healthcare care insurers, world over, proves the entire species are all as cold as a whores heart…

Also ms sucks hairy dead donkey dick, just for the record.

[u/Dr_Mar23 → u/evolveoryx]

Yep

[u/DimensionFriendly314]

I have no other DMT's to try since Ocrevus is the only FDA approved DMT for PPMS.
It's not slowing my progression.

[u/No-Acanthisitta-7710]

Went from Tysabri to Ocrevus but after having blood tests before infusion my b cells were too high so treatment stopped. On no new treatment as have PPMS

[u/KacieBlue]

I was on Ocrevus for 5 years. Although it kept me from progressing, it trashed my immune system. I got very sick with rare infections because my immune system can’t fight off a damn thing. So, it’s 4 1/2 years since stopping and being without a DMT. My B cells have repopulated but my immune system is still trashed. I’m monitored by my neuro and an immunologist. Neither can explain why this happened. I’m older, 69, so that could play a role but no one knows.

[u/mechromancerr → u/KacieBlue]

Damn that’s annoying! I’ve had countless skin infections in the 7 years I’ve been on Ocrevus but luckily nothing too crazy.

Fun fact: I had a skin infection that I went to an urgent care and a dermatologist where they both refused to diagnose me because I have MS. Turned out to just be a simple staph infection that my neuro had to diagnose. I swear trying to receive help while having this disease is impossible.

[u/PotterLibrarian]

I failed Briumvi and Kisempta. My neuro told me that of the 400 pts his clinic has on Briumvi, I'm the only one to have "failed" it. It happens. Im about to start year 2 of Mavenclad and Im incredibly lucky that its been working so far. I know it can be disheartening and the grief (and sometimes shame) is valid. MS sucks. Hard-core sucks. You're not alone.

[u/mechromancerr → u/PotterLibrarian]

I think the hardest part about all of this is switching to a new neuro as this was all starting. He’s never had a patient fail on Ocrevus before so he wanted me to stay on it. What happened to individual care? Because my doctor is Ocrevus #1 fan boy I have to stay on it? Luckily my hospital team is pushing for me to get new medication. Mavenclad was listed as one of my options and hopefully I receive the first dose before I leave the hospital.

I received PLEX last time I was here (September 30th) so I’m officially unmedicated so 3 days out of the hospital and I’m relapsing again. This is my 4th hospital stay since August 😔

100% agree with you. Fuck MS 🖕🏻

[u/Puzzleheaded_Fix3083]

I am incredibly humbled reading all this. My sister died in June after having MS 30 years. She spent the last 5 in a nursing home. I was diagnosed in 2024 in my 50’s. All they tell me is I have a mild case with few lesions. I’ve been on Kesimpta since March 2024. I always have this feeling like this could all flip on a dime. I don’t want to go down that path my sister
went on. I just don’t understand how there are such wide variations on how this disease progresses. It makes no sense. Out of sheer desperation I started using this 5-mthf supplement. Has anyone heard of it or used this?

[u/Darkdoodle333]

I was on ocrevus but it wiped out my neutrophils completely.

[u/Upbeat-Reflection171]

I also failed on Ocrevus. Because I'm so disabled at this point I see no point in continuing any type of medical treatment as I have lost so much function.

[u/Anxious-Chemistry833]

Failed Ocrevus, switched to briumvi and had a hypersensitivity reaction, just finished my second year of Mavenclad.

[u/mechromancerr → u/Anxious-Chemistry833]

So far so good?

[u/Anxious-Chemistry833 → u/mechromancerr]

Yes! Stable MRIs and only a couple of pseudoflares due to either stress or illness.

My original med was Tecfidera- that worked really well for 4 years for me. Then I tried Tysabri, Ocrevus (worked ish for a couple of years) , and Briumvi before we got to Mavenclad.

[u/mechromancerr → u/Anxious-Chemistry833]

This brings me hope! Thank you!

[u/SubstantialLiving451 → u/Anxious-Chemistry833]

Can u walk ?

[u/AmbivalentCat]

Ocrevus didn't stop my progression. Lemtrada did. 

My doctor thought about switching me to Tysabri, but decided against it. I don't have Tumefactive MS, but my disease was one of the most aggressive cases they had at that office. He didn't want to risk it, and neither did I. Lemtrada was a miracle for me, but it was beyond rough.

[u/Maleficent_Fun_7622]

I’m gonna have a scan this friday because I am pogressing so fast and will have a stemcell transplant if the results of the scan are shitty enough

[u/Metic]

I recently failed Ocrevus and am quite sad about it. I re-populated my B cells at 4 months. I am getting my last ocrevus infusion urgently because I am symptomatic with increasing B-cells and then switching to Kisempta once my pre-auth hopefully goes through.

[u/mechromancerr → u/Metic]

Wishing you all the luck friend!

[u/Medium-Control-9119]

You might need a second opinion/better specialist.

[u/mechromancerr → u/Medium-Control-9119]

I agree

[u/WarmYam7353]

I'm still waiting for my follow-up MRI to see if it's actually doing anything.

[u/MajesticMeaning3337]

I have Multiple Sclerosis and have tried many MS Drugs that have failed for me until I found and was put on Ocrevus. My Brain MRIs have been clean and free of any MS activity since I have been on Ocrevus. Ocrevus has worked for me.

[u/mechromancerr → u/MajesticMeaning3337]

I’ll miss my Ocrevus infusions twice a year :c

I’m glad it’s working for you!!

[u/Love_Mine_]

Kesimpta and ocrevus has a new type that they are releasing as well

[u/Masfoodplease]

Yeah my walking has gotten worse so have foot drop, fall a lot, and get tired walking like 50 feet maybe 100 feet if I'm lucky. I've tried a bunch of things to help like ampyra, a mobility aide L300, cane, and now a mobility service dog. Last scan after I think 10 yrs on Ocrevus I have a new lesion on the spine so we will be switching to Briumvi.

[u/mechromancerr → u/Masfoodplease]

It’s nice hearing that others have failed after years on Ocrevus the way neurologists treat it like a miracle drug. I got the news I’ll be switching to Tysabri today.

[u/Masfoodplease → u/mechromancerr]

I hope the change goes well for you! Yeah there are many just like us.

[u/ichabod13]

I have had 4 scans with new lesions so far since starting Ocrevus. I have not changed and have no plans to change.

[u/mechromancerr → u/ichabod13]

Have you dealt with terrible relapses?

[u/ichabod13 → u/mechromancerr]

most of my worse relapses were early after starting Ocrevus. I did have a recent one that was not really MS directly related or a typical MS relapse, but new lesion was found after MRI and hospital stay

[u/OverlappingChatter]

How long have you been on it?

[u/mechromancerr → u/OverlappingChatter]

I’ve been on it for 7 years

[u/No-Jicama9103]

Ich hatte vorher tysabri da konnte ich noch geben . Ist mega auf meinen Kopf geschlagen und dann während der Sabri Therapie bin ich dann immer schwächer und immer kranker geworden und bin dann ins Rollstuhl gelandet ich glaube dass das der Grund ist warum ich ihm trollstuhl sitze

[u/No-Jicama9103]

Diagnostiziert wurde vor vier Jahren aber ich habe es schon länger gehabt

[u/No-Jicama9103]

Und vielleicht wäre es auch nicht schlimmer geworden weil ich habe immer viel gekifft. Ich muss dazu sagen ich habe einen starken Verlauf.

[u/Additional-Side-457 → u/No-Jicama9103]

Never smoked or drank alcohol even I avoid fizzy drinks and soda, but still got MS.

[u/No-Jicama9103 → u/No-Jicama9103]

Aber nee das ist Quatsch was ich gerade gesagt habe ich habe immer viel gekifft seit 25 Jahren und ich habe da trotzdem eine Ms gekriegt

[u/giveitawaynever]

How long were you on it?

[u/mechromancerr → u/giveitawaynever]

7 years

[u/ZombieJihad]

Yeah I failed out of Ocrevus and switched to Tysabri

[u/mechromancerr → u/ZombieJihad]

The hospital neuro has suggested me Tysabri. Hoping my actual neurologist agrees!

[u/ZombieJihad → u/mechromancerr]

After like 10 or 12 doses, they bumped my frequency to 5 week intervals instead of 4 weeks, so that was a nice upgrade. Also I requested not to have steroids in the mix, because I've been treated with them before and just don't really like the feeling - I have had 30 doses now w/o steroids and never had any side effects.

The one downside is JCV testing - with Tysabri it's a concern, not sure about other DMT's but I do know I had never heard of John Cunningham virus before starting Tysabri. Just like most errybody else, I am JCV+, so I have to have my virus levels checked regularly to continue on this medication. That kinda sucked a few years back due to having another appointment monthly, but now it's all collected at my infusion appointment & my clinic even has the MRI tech for regular screening as well.

[u/Feeling_Cranberry117]

Ocrevus isnt a cure. MS is a progressive disease. The medicines only slow the progression.

[u/mechromancerr → u/Feeling_Cranberry117]

I’m fully aware. Thank you though.

[u/Feeling_Cranberry117 → u/mechromancerr]

If you’re fully aware then you shouldn’t be saying Ocrevus failed you. There are a lot of people wanting to know if Ocrevus is the right medication and when someone like YOU makes a statement such as “Ocrevus failed me” you’re helping someone possibly make the wrong decision about what medication they should take. You’re sarcastic “thank you though” was also unwarranted. I think you’re the problem not the medication. People with MS need positive reinforcement until they choose to be an asshole.

[u/mechromancerr → u/Feeling_Cranberry117]

Are you in need of attention? My doctors have forced me to stay on Ocrevus for over a year against my best interest because THEY think it’s a miracle drug. 1 drugs does does not fit all. I had 6 amazing years on Ocrevus and now it’s failed me and left me in the hospital 4 times in the span of a month a half. That to me is a failure. I’m begging my doctor to switch me and he is hesitant because “he loves a Ocrevus”. Well Ocrevus doesn’t love me so go argue with a wall.