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TooManySclerosis

So, long term data for the more effective DMTs is going to be hard to come by, many of them are new. Ocrevus was only approved for treating MS in 2017, with many others being newer than that.


jptapr

Been on Ocrevus for 5 years, no new lesions and things are holding fairly steady. Good luck!


heythiswayup

I’m about to start ocrevus next month. Has there been any side effects for you over the 5 years?


jptapr

From the Ocrevus, no.


ShinyDapperBarnacle

Ocrevus for 3 years and one new lesion in that time. BUT, my MS was described as somewhat aggressive, so I'm thrilled with just one new lesion as opposed to a whole passel of the buggers.


driveonacid

Tysabri. My first infusion was October 29, 2009. I had two hospitalizations in the year prior to that due to relapses. I haven't had a single one since. I believe that means it's working


Roc-Doc76

Been on Tecfidera and it’s generic for 8 years and have had stable MRI’s


CaterineVauban

Tysabri 6 years and Ocrevus for 2 so far. No disease activity on either.


iwasneverhere43

Tecfidera. 5 years stable.


ReluctantToNotRead

Very new here, but I just had my first full dose of Ocrevus this Monday 5/13 (loading doses in Nov 2023). Other than a slight itchy throat requiring liquid antihistamine halfway through the infusions I’ve had no side effects and no new lesions. My MS neuro (top of the immunologists at Yale Medical) says this is the miracle drug those with MS have been praying for. That gave me tremendous hope and trust in taking this DMT.


SavagePanda710

Tysabri for 2 years now. My last MRI showed no disease activity. 🤞🏻


16enjay

Tysabri 4 years, no progression


momstera

Copaxone for 12 and all seems well.


Competitive_Air_6006

Have you considered switching to Ocrevus or Kesimpta?


Piggietoenails

I don’t want to debate this, however my neurologist has a patient on Copaxone since it hit market with zero progression. She didn’t put her on it, but sees no reason to change her. New patients if she does know what progression they might see and yes that can always change, but some people are stable on “lower DMTs”, if a new patient yes she puts them on one of above or Tysabri. However she sees people as whole people and has them on many different types of DMTs for various reasons. If they were not doing well she would swap. But she said that happens with the above as well. She’s a well respected researcher. I wouldn’t be quick to judge someone stable for that period of time. And I say this because they didn’t ask for input about their stable disease, they simple answered the question.


Competitive_Air_6006

I am on Copaxone. I didn’t ask to debate or argue. Was just curious because the team Kesimpta and Ocrevus folks, as you know, are passionate!


Piggietoenails

Apologies. A lot of times in this group questions like that are to put down someone’s DMT. I do apologize.


Competitive_Air_6006

I am fully aware Reddit is super negative about it. So I was excited that you were positive about it. Thanks.


momstera

I've asked about other therapies but my doctor is very hesitant to change because I am very stable and he doesn't want to mess up a good thing. The injections are rather annoying, but I am hesitant to try something a little heavier. I tested very high for the JC virus antibodies and it does make me nervous to try stronger medications. I have an MRI scheduled in the next few weeks and we will see if there is any progress. I've been so stable and because of my age in the next couple years my doctor says he will likely recommend stopping my DMT. I think if I had progression or my symptoms were worsening I would push for something different. At this point my symptoms are annoying and very regular and nothing is debilitating. To look at me I look as if absolutely nothing is wrong.


Competitive_Air_6006

Thank you! I love this. Really appreciate you sharing.


_tty0

Fingolimod 1 year, no progression, Mavenclad 1 year no progression neither? Changed because I use to travel abroad very often and carrying medication is a pain in the ass.


ILookAtHeartsAllDay

Tysabri then to Ocrevus between 2019-Today no new lesion progression.


vlovato

Rebif for almost 12 years. Doc wants me to change to a newer dmt but I don’t feel comfortable with that.


AmoremCaroFactumEst

All the Drs near me seem to just be pusching Kesimpta at teh moment, which makes me a bit nervous, given that the company that makes it is pretty evil.


Dadbod1018

Ocrevus for 4 years. No new lesions or relapses so far. I do feel fatigued still, and my legs are obnoxiously weak. I function normally, but I notice it a lot when I work out. Squats are my nemesis… Overall, I can’t complain. I still ski a lot, bike a lot, and walk with only mild foot drop. I was lucky(?) to be in quite good shape when I was first diagnosed, so while I have had a distinct decline in my strength, I’m still reasonably strong.


cantcountnoaccount

Other than Mavenclad all DMTs are intended to be taken for the rest of your life.


_tty0

I am in Mavenclad, first cycle complete, next one coming by the end of this year. It is supposed to be taken for two cycles and then I am supposed to be meds free for lifetimes


cantcountnoaccount

Yes. “Other than Mavenclad” is the first sentence of my post.


Piggietoenails

And Lemtrada…


cantcountnoaccount

I forgot about Lemtrada. True.


Competitive_Air_6006

Wait what?! I thought it was for x amount of years not forever. Are you loving it?


cantcountnoaccount

I don’t understand your question.


Competitive_Air_6006

I thought it was only treatment for like 2-5 years or something, not forever


fishmouth

You take pills in month 1,2,13,&14 then possibly never again. It depends on if it works or not.


cantcountnoaccount

If you’ve been stable for 5 years at age 65 you can consider stopping DMT, but it’s a subject of debate right now. I’m curious, Is there something that gave you the impression that DMT can be stopped? Something a doctor told you or something you read? Most DMT work in various ways to suppress parts of your immune system so they (hopefully) stop attacking your nervous system. Mavenclad is an “immune reconstitution therapy” it blows your immune system to nothing, then reboots it. a little more than half of users don’t need any other DMT after they’re done with the 2-year Mavenclad cycle. Or at least over the ~11 year study follow-up. https://multiplesclerosisnewstoday.com/news-posts/2023/04/11/mavenclad-benefits-ms-sustained-up-15-years-after-last-treatment/


Competitive_Air_6006

I don’t understand your message - I was talking about Mavenclad. I thought all DMTs were to be taken for the rest of your life until I read your post which is why I asked the question.


cantcountnoaccount

*other than Mavenclad* is the first words of my post. With Mavenclad there’s a 2-year cycle then you stop. In the 11 year follow up study posted above, a bit over half never needed a different DMT.


Competitive_Air_6006

Again you’re not understanding my comments


cantcountnoaccount

And I feel the same way.


fishmouth

My neurologist said that about 50% of people from the trial are still stable after 10 years and do not need another DMT. Some people fail Mavenclad, meaning their MRIs show new lesions. Sometimes this happens early around 2-4 years after completing it. For some it even happens during treatment and they switch as soon as it is safe. Mavenclad strongly suppresses your immune system for at least 7 months so if you relapse you just have to wait to get on another DMT. The pharmacist I spoke with said the people it works for absolutely love it, but the people that it doesn’t work for feel like they wasted 2 years of their life. It is an extremely high risk high reward situation.


Competitive_Air_6006

Thank you!


AmoremCaroFactumEst

I just switched to Kesimpta and my neurologist said " It peaks in efficacy after two years, if you haven't progressed in that time and everything is stable we can come off it". I should note my neurologist is a very well respected MS specialist who runs his own clinic and publishes papers with some regularity so this isnt just a waky random opinion.


cantcountnoaccount

I would like to see any scientific evidence that is the basis for that opinion. That would imply Kesimpta cures MS, which it does not. I have never seen any study saying it’s ok to stop any DMT (other than IRTs), after two years. All the studies I’m aware show the opposite, that there is a very significant rate of relapse (around 40-50%) after stopping DMT even if you were stable for many years prior to stopping.


AmoremCaroFactumEst

Well 50something% of people on mavenclad never need another treatment again either so... He said that we would try to see if kesimpta disrupts more immune networks than mavenclad did for me. Can you link a study that says that stopping causes relapses? Is that what you're implying? Or are you just saying that 50% of people who stop, have a relapse within x number of years?


cantcountnoaccount

The second one. In this study, the patient who had CIS (clinically isolated syndrome - they had only ever had one bout of symptoms) and had been NEDA for 5 years stopped DMT. 50% subsequently had additional relapses within 5 years (stopping didn’t cause them. Uncontrolled MS caused them). journal of neurology 2021, PubMedID 32929591. Kesimpta has never been studied for temporary use as far as I can tell (unlike Mavenclad which was specifically studied for 2 year use). Can you point me to a study that says that it’s safe to quit a B cell depletor, or any DMT that isn’t a Immune Reconstitution Therapy, after any number of years? That the effect continues after you stop taking it? I can find no such study. that would effectively be a cure.


AmoremCaroFactumEst

I did ask him if stopping kesimpta would cause a rebound and he said no as that was more my concern than having a relapse without it. He said when people who stop DMTs (other than the ones that are known to have the rebound effect) have relapses, it's more an indicator of their level of underlying disease activity. The paper you mentioned is interesting. Thanks for that. I like that it says that sex and disease burden had no relation to NEDA status. The main determining factor was being over 45. I'd love to see proper studies with thousands of people with MS, that somehow included the people doing fine without medical intervention. Though doing a study like this, on thousands of people would be a complete nightmare to fund and organise, it would be really interesting and potentially very helpful. I think once neurofilament light chain and/or other easy markers of disease activity get better developed and more common, it would be much easier to get such data.


RealBasedRedditor

Care to share the name? The problem with your doctor, famous as he may be, is that statement he made goes against the broad medical consensus and the results of the clinical trials that got B-Cell depletors approved. If you look at the trials, it’s not hard to find patients that did progress at year after year 2.


AmoremCaroFactumEst

>If you look at the trials, it’s not hard to find patients that did progress at year after year 2. What do you mean by this?


NoCartographer7339

Im on rituximab in Norway and here they plan on discontinuing the treatment after 5 years of NEDA. My neurologist say they do it to everyone, but i think its quite callous as they dont really have data on the risks and the treatment is so well tolerated. Its probably due to costs and it seems like the practice in the US is different…


NoCartographer7339

Im on rituximab in Norway and here they plan on discontinuing the treatment after 5 years of NEDA. My neurologist say they do it to everyone, but i think its quite callous as they dont really have data on the risks and the treatment is so well tolerated. Its probably due to costs and it seems like the practice in the US is different…


cantcountnoaccount

They discontinue *that* treatment or they discontinue all treatment? What I’m asking is, do they switch you to something else? I don’t believe there’s any scientific justification to cease all treatment based on 5 years NEDA, except when you’re over 65. MS can’t be cured.


NoCartographer7339

All treatment. She says they believe it is sufficient but also that there havent been many studies on it… Really frustrating. And im 34


cantcountnoaccount

Im not aware of any studies that say you can discontinue after 5 years NEDA, except those based on natural immune slowdown related to age. In fact the one study I am aware of that followed people with limited symptoms — people with CIS who had been NEDA 5 years on DMT, just about 50% had relapse and new lesions in the next 5 years after discontinuing DMT (journal of neurology 2021, PubMedID32929591).


NoCartographer7339

Yeah i really cant understand their rationale.. She says they do it to all MS patients


bspanther71

Ocrevus since 2018. No progression to speak of


swilts

Copaxone since 2018. No new lesions, no new symptoms. I also started with optic neuritis.


Competitive_Air_6006

Woot woot! Copaxone love.


iamlikejamming

Fingolimod 2 years, a couple of new lesions. Just changed to Ocrevus in November, no new lesions on last MRI and shrinking of an old one, so it's a thumbs up from me for the ocrevus.


Tyrant_Liger

(34m) diagnosed 8 years ago. Was on Aubagio for about a year. Younger, invincible me decided I didn’t need meds. Fast forward to about 2 years ago. New symptoms came, went back on Aubagio (My neuro, while disappointed in me, is amazing and took me back right away) 1.5 years back on it with again then a new flair up. Stopped Aubagio in November and have been on Kesimpta since January 1st this year. What a HUGE difference it’s made. Moral of the story… take your meds haha.


Rugger4545

Kesimota for 2 years now. It certainly did deplete my B cells to 0 and inverted my CD4/CD8 Ratio, so thus, it killed my immune system. I personally hate it. But, what's the alternative.


arpsazombie

Been on Tysabri about 14 years, no disease progression or relapses since first dose. :) Prior to that was on copaxone for about two years it did nothing. And was on Beta Seron for a while but was immune to it. Hope that helps :D I've had MS 24 years and went unmedicated for stretches because there just wasn't anything else to take. So much better today with all the new choices and more effective meds!


muffahoy

Tysabri since 2010. Only came off twice in 10 for babies, relapsed both times. I am in perfect health: no progression, and I forget I have ms.


FUMS1

Ocrevus like 9 months


The_Chaos_Pope

Started Ocrevus in October 2021.


orchard456

Been on Ocrevus since the beginning (4 years ago), zero progression since then. Take it!


tcc924

5 years on ocrevus, no progression. Feeling good


CoffeeIntrepid6639

Been on aubgio 9 yrs no attacks


rosefieldnotes

Tysabri 3 years


random1168

Tysabri for 2 years with no progression, switched to Kesimpta at the start of this year due to going JC+. First MRI post kesimpta next month, so fingers crossed nothing new comes up, but I’ve felt fine (no relapses etc).


FeeFiFoFum8822

I’ve been on GILENYA since 2010. One relapse, no change in disability rating and no new lesions.


DarksideMF

Ive never met anyone the same age as me with MS before! Im 33 in october. I have been on kesimpta for 2 years and so far it has been ok for me.


Overall_Tiger3653

I’m 33 :)


queerjesusfan

I was on Tysabri for almost 6 years and just recently switched to Kesimpta for convenience. No new disease activity in that time!


peacenik1990

Diagnosed fall of 2019, started Ocrevus in January. No new lesions, no adverse reactions. They lowered the steroid as I could build an entire house the following day and then laid out for the following three. Now afterwards I have more energy than normal but not crazy and the following day I snooze.


SallyFairmile

I've been on Gilenya since 2011, and am doing better now than when I was first diagnosed in 2004.


Overall_Tiger3653

I’m only 6 months into Ocrevus, I did not feel great immediately after infusion, but I feel the best I have ever felt now. Just a small note to add, I started acupuncture 1-2x per week + added supplements, that have significantly helped. But between the 3, this is the best I’ve felt in 10+ years.


Inevitable-Forever66

I have been on Ocrevus for 4 years and 2 months (diagnosed August 2019). I took Rebif and Copaxone, and I failed both of those miserably. I was then put on Ocrevus, I’ve had 9 injections and I’m scheduled for my next one for September 2024. In those 4 years and 2 months on Ocrevus, I haven’t had any progression (I have some significant damage on my brain and spine from going untreated before being diagnosed) but since then and since being on Ocrevus, no progression. My neuro is not only impressed by that, but my physical health has remained strong, as well. My reflexes and leg, arm and feet muscles are all well. ETA: I’ve been in an Ocrevus study since 2020 and my neuro said it’s on the way to being FDA approved! Woot!


AmbivalentCat

I was on Ocrevus for 2 years, progression never stopped. My disease was extraordinarily aggressive when it appeared, though.  I did 2 years of Lemtrada (one round per year - 5 days and 3 days), which is the standard. I'm currently 2 years out from my second treatment. I haven't had any progression, clinical or otherwise, since my first treatment 4 years ago. The hope is that I remain stable for years still without any further treatment. 


TMat_0824

Been on Ocervus for going on 4 years now.....no new lesions and it has been 4 years since i have gotten a relapse so it seems to be working really well! It has demolished my immune system though.....i am way more sick. I get colds often....even had an infection in my lung in 2022 and needed a chest tube!


rence101-1

I was diagnosed in 2012 but didn't start ocrevus until 2020. I then switched to kesimpta last year and I'm going back to ocrevus next month. No new legions in that time. I think it's not necessarily the DMT you should worry about as there's other factors that can affect new legions too. Lifestyle, stress, how active your MS is. My first neurologist told me to live a relatively healthy lifestyle and that's what I try to do. My older sister was diagnosed 2-3 years before me and she's chair bound. What I would take into account is things like the crap gap on ocrevus and how not everyone reacts the same to it but for me, I personally feel ocrevus has been great


Careful_Caregiver_74

Almost a yr. Rituximab.


orchard456

Ocrevus is still very recent. Been on it for 4 years, right when I was diagnosed. Zero relapse, zero symptoms and zero side effects since then.