Ocrevus and MORE disability

[MSohio2021]

I started O in March, stopped driving by May, had my first full dose earlier this October, and have an electric wheelchair coming next month. WTH? This is crazy and I’m just told my “MRI’s look fine”. Is my body not doing what it’s supposed to do with O or will it just get it eventually if I hang in there? Could this year just have been one long relapse?

[Frances_B]

It's likely that the damage which has made you deteriorate over the past six months was already done before you started treatment. None of the MS drugs will give you a miraculous backtrack to perfect health - in people who have RRMS they work by reducing or stopping the relapses which cause the damage and disability. You can still get improvements though if your body is able to repair some of the damage which has been already caused, but only time will tell.

[twooldcrows]

have you talked to your doctor about all of the changes you are going through ...i have not had any of these things with mine but again like they say we are all different but it is suppose to slow it down ...hoping they find out what is going on ...prayers for a recovery ...so hope for you to get better not go backwards ...talk to the doctor ...please...

[MSohio2021 in reply to twooldcrows]

Thank you for your response and your prayers. I see my ms doc next week, so I’ve already started writing stuff down!

[Samrawitbedilu848]

i think there is long term relapsation and short term in me my relapsation duration is short but be happy there answer from God

[kwhompus]

I think of "O" as a catch 22. I've become worse since my infusions started 4 year ago. The question is, would my progression be faster had I not taken O ??? We don't know and I'm not willing to find out the hard way. Talk to your doc and get a real, honest expectation of O and what it it actually does to your body in its fight against your MS.

[positiveness]

Yes, I actually wrote a book about My MS and Ocrevus Journey, because I want everyone to know how the DMT worked for me. It’s definitely not a walk in the park likoso many would think.

[JTZES]

I've been on Ocrevus for the last two years. I have sworn that I have had several exacerbations but my MRI's were fine with the exception that some of my old lessions have deepend causing my symptoms to get worse.But I would think would change DMT'S based on you having so many problems on it.

[rjoneslaw]

I've been on O since june 2019. For me I saw improvements my spasms started to relax.

Prior to being on O I was on tecfidersa and it stopped working as a result I lost the ability to walk for 2 weeks.

Since being on O and going to inpatient rehab to outpatient day rehab and outpatient pt I was on my way to getting off the walker to the cane. then 2020 happened back to the walker I went then at the start of the year I was put back into outpatient day rehab which I just finished (jan 4, 2021- Oct 20, 2021) and now I have to wait til Jan 2022, so that my insurance can reset.

I also do the ms gym (which helps me (themsgym.com), I do the paid program because its structured and I can get feed back from other members and the coach

[MSohio2021 in reply to rjoneslaw]

Thank you. I will check out themsgym.com!

[rjoneslaw in reply to MSohio2021]

let me know how you like it.

when you click on the menu you can see the free programs and the pdfs for some exercises are on the the home page you can check out

if you just sign up for one of the pdf downloads you'll get emails from them I actually signed up for a trial membership and thats how I got hooked and when the trial was over I was given a promotional deal and now I pay that same price each renewal period

[MSohio2021 in reply to rjoneslaw]

Omg, I LOVE it! Seriously, why don’t ms doctors or more people with MS point new patients in this direction?! I’ve been Dx since 2015 and I’m just now finding this!

[rjoneslaw in reply to MSohio2021]

since i told my doctors and pt bout it they tell other patients

[wolfmom21fl in reply to rjoneslaw]

there is also MSWorkouts available.. they have a ton of videos on youtube available for free, as well as a paid program and a bootcamp type thing all online.. the guy that leads the whole thing goes thru each exercise and explains everything while showing you how to do it.. then shows how NOT to do it.. very informative and the exercises are made specifically for pwMS to target specific muscles and muscle groups.. to help with balance and walking, core strength etc.. i love this guy

[MSohio2021 in reply to wolfmom21fl]

Thank you! I will check it out.

[rjoneslaw in reply to MSohio2021]

I did the ms workout I didn't like them. Some people do

I just posted a 30 day trial that ms gym is having but u have to sign up by nov 1, 2021. U can find it under my profile if you dont see the post

[MSohio2021 in reply to rjoneslaw]

$20 off coupon code, from their $37 price? Is this correct?

[rjoneslaw in reply to wolfmom21fl]

I did the trial and I didnt like them

[kdali]

That’s a lot to adjust to in a short time 😞 Have you had a second opinion?

[MSohio2021 in reply to kdali]

She is my second opinion. 😐

[kdali in reply to MSohio2021]

Pt consult? You are not alone in wondering those things when faced with declining health on a new treatment and unchanged scans.

[Neworleanslady]

I feel the same about starting O. My walking has gotten worse.

[MSohio2021 in reply to Neworleanslady]

How long have you been on Ocrevus?

[Neworleanslady in reply to MSohio2021]

I received my 2nd infusion in September

[tompumo]

Ocrevus does NOT improve your condition. It slows down your getting worse. There is no drug for improvement. Ask your doc.

[MSohio2021 in reply to tompumo]

Yes but can it worsen your condition? Can it cause a relapse because of how it’s affecting your body?

[tompumo]

I'm not a doctor. But I have never heard of a relapse caused by O. It removes certain B cells which reduces T cell activation, reducing myelin damage progression. O does not act directly on myelin.

[anaishunter]

I'm no doctor, just thinking through what you shared. Has your doctor tested your Bcells after an infusion to test whether Ocrevus does what it's supposed to do?

(suggesting this because in my case, Ocrevus destroys a lot more than the targeted Bcells and my neuro is testing a half dose of Ocrevus.)

[kdali in reply to anaishunter]

I’m excited to hear how you do with a half!

[anaishunter in reply to kdali]

It's been a year (2 rounds of Ocrevus - I had 2 rounds of full does prior) and it's working fine for me. No (visible) difference.

Only blood tests can tell the story. My neuro has been diligent in testing 1 month after a 1/2 dose injection to make sure that all CD20 B-cells are depleted and I'm protected. Then at 4 months to see if B-cells were coming back earlier and whether my immune system was bouncing back, etc..

My T-cells are coming back every time very slowly but at least coming back to normal levels compared to full doses which is probably better for my overall health. The CD20 B cells that Ocrevus is designed to kill are also coming back but not to levels that present any danger.

My takeaway is to get a blood test prior to your next Ocrevus infusion if you can.

[kdali in reply to anaishunter]

That’s awesome, ty for sharing, this is very helpful.

[kdali in reply to anaishunter]

Depletion greater with increasing exposure…

Words

[MSohio2021 in reply to anaishunter]

Now that you mention it, I remember how awesome I felt when I received my very first infusion, which was only half of the amount I was to receive. Then, when I went back for the second half, I remember feeling like crap! I forgot all about that until you mentioned getting only half of the full intended amount. For some reason I remember my doctor telling me that it doesn’t matter how big or small you are, the dose is intended to be that much for everyone. Doesn’t make sense to me! If I only weigh 100 pounds, how is the full amount OK for somebody who weighs twice as much as me or more?

[anaishunter in reply to MSohio2021]

Your thinking seems logical.

In my case, it has nothing to do with weight (I'm also on the low weight side).

They've done enough research to show that Ocrevus, in some people, touches more than the CD20 Bcells that are targeted and also destroys some of the Tcells which is an undesirable side effect. I'll try to find the related research and share.

[kdali in reply to MSohio2021]

If you’re interested, there’s a theory that it is weight based and some will do better with a higher dose, which is in trials now. I believe it’s 900 and 1200mg.

[LAS3]

I experienced the same with Ocrevus, and after I received the full dose seem to progress rapidly. Told my neurologist and she would not listen so I stopped and I thank God I did.

[MSohio2021 in reply to LAS3]

I’m about to do that because this is MY LIFE and I feel like a zombie! I’m just crossing my fingers that it’s not killing me!

[kdali in reply to LAS3]

How long ago was your last infusion?

[MSohio2021 in reply to kdali]

Just October 4, so I’ve got 4-5 more months feeling like this?!

[kdali in reply to MSohio2021]

No one knows, but I hope not. I have had 3 very different experiences so far with this drug myself, and my starting point each time was worse than the time before from MS. Having spent a lot of time cruising hate groups for input on just how people improved after decline and how long it took them, I feel like you are on the right path with what our friends here recommend with the MS gym and exercises, but I still question a PT consult.

[IFwczs]

It's chemo. Everyone I know including myself has been crippled by it.

[MSohio2021 in reply to IFwczs]

😩