The purpose of Ocrevus

[IFwczs]

Ocrevus is not supposed to provide cure for MS or even symptoms. It is the only MS medication that is supposed to slow down disability. When I told my neuro I was able to walk for 2 miles after the infusion, he said it was the steroids. And sure enough, it went back to "normal" a couple of weeks later. The only thing that has changed is more energy.

[Royjr]

That’s why whenever I hear all these amazing outcomes with people on Ocrevus I always reply to slow down. It might be the steroids they give you pre-infusion. I’ll continue to hope for DMT to better treat MS and it’s symptoms. ONE DAY!!

[IFwczs in reply to Royjr]

I think it's pretty big already. I had been on Tecfidera for 4 years, and it does nothing for disability. I think my disability had actually progressed on Tecfidera. What are you taking?

[Royjr in reply to IFwczs]

I been on Tysabri for over 10 years and before that Avonex

[erash in reply to Royjr]

Not steroids! My benefits are sustained and that was 1/10th the steroid dose I usually get for relapses.

And steroids have helped with relapses in the past but never have gotten me to better than my previous baseline.

I did not have this expectation of ocrevus and everyone is different and what tomorrow brings I don’t know but I am a believer. Not the steroids

[Iona60 in reply to erash]

I'm so glad that you tried O and are having amazing results.

[anaishunter]

My read of Ocrevus is that it is supposed to block/(or slow?) the creation of new lesions in the brain.

Based on this, the impact on symptoms might be quite varied as some of us (like me) have many lesions and few symptoms; some of us have many symptoms and few lesions.

[IFwczs in reply to anaishunter]

And I have most of my lesions in the spine.

[anaishunter in reply to IFwczs]

Yep. All the literature out there on Ocrevus isn't very specific as to whether Ocrevus stops the creation of new lesions in the brain, or in the spine or both. Based on how it works (killing B-cells that bind to CD-20), I'd except that it stops both. A good question for my neuro next time I see him.

If you find clarifications on this (spine vs brain), let us know.

(my lesions are distributed across spine and brain, with active ones in both areas on last MRI in June).

[IFwczs in reply to anaishunter]

I actually asked my neuro 2 days ago. He said that it is CD-17 cells (subset of CD19 or 20), but these tests are not yet done commercially, so the hospital is considering doing a research study.

[erash in reply to anaishunter]

Most my lesions spine (although plenty in brain too )

[Guava69]

Even though it has not kept it's high expectation but you're experiencing More Energy that sounds like a great positive to me👍☺️

[IFwczs in reply to Guava69]

Agreed. Energy was one of the results in these trials. But it did not promise any reversal of disability.

[erash in reply to IFwczs]

But I did get reversal of symptoms

[kdali]

I don’t think any DMT claims to cure MS, and maybe some can offer a respectable amount of slowing progression. More energy is pretty amazing for this disease, congrats on that much 🎉

[IFwczs in reply to kdali]

Thank you!

[IFwczs in reply to kdali]

And I was being sarcastic about curing MS.

[kdali in reply to IFwczs]

Good! 🎉

[SjWilcox]

I think we all are just poising ourselves with these drugs. I was on Orkelizimab on th the trial for two years, Ocrevus know. Copaxone and Tecfidera. They all hurt more than they helped.

[IFwczs in reply to SjWilcox]

You know, I think Tecfidera hurt me as well, and I don't know if it helped.

[IFwczs in reply to SjWilcox]

But how did Ocrevus hurt you?

[CraigS]

I’ve said it before, but I don’t have any evidence of any change due to the Ocrevus infusions, problem is, if I stop, everything may speed up.

‘It’s a puzzlement.

[SjWilcox]

Ocrevus did slow things down. I lost hair and sexual functions while on it. That may or may not be from the drug.

[Allen5280]

I have also been fighting hair loss, I've been on the big O Since May 2017. The loss started with big clumps comming out to the point I was nervous every time i washed my hair it looked like I shaved a small critter in my shower. After talking to my doctor started Bioten shampoo and conditioner and also my men's one a day vitiman also had supliments Bioten. It doesn't seem to be as drastic, still thin and brittle but asking a woman at Wal-Mart she pointed me into how to help that. Seeing a lot of regrowth so it's not permanent. My doctor and I talked about the possibility of the shock to my system being a factor. It would knock me down and just suck the life out of me for awhile. My doctor started me on Modafinil and that helped this past infusion. The previous took 6 weeks for me to return to baseline afterwards. I get 2 to 3 days feeling really good, my Neuro/specialist told me that it was due to the benadryl in my IV not the corticosteroid.

[JTZES]

Ocrevus is not a cure. Only a DMT. Results during testing were excellent. Along the lines of Tysibra with a more limited chance of picking up PML if your JVC positive.

I can say for myself I believe it has cut down a big exaserbation where I needed steroids but I still have progressing symptoms. Just the kind you blow off due to MS.

My last infusion was last Wednesday and I was no longer able to receive my infusions through a hospital based net work and I would need to find an infusion center that will be covered by United Health care.

[Hidden]

Thank you for bringing up the topic, and noting your opinion of the O. I have had the first 2 infusions, and wait for time to pass until the next infusion. Ocrevus hasn't provided anything good for me. The readings I do, and the deep pondering, leave me inclined to believe the real "slowing down" is realized at approximately the 14 month point. Cannibis appears to be the only option remaining for my legs. I must find some way to relax the leg muscles. The muscles are so tight, they feel as if they are on fire. Sleeping is a challenge. Oh well. 2019 may become "The year of medical break-throughs". Take care. C-Ya.

[tompumo]

Ocrevus may slow down the creation of new lesions. It has no effect on existing lesions. This is critical for a progressive disease like MS.

[IFwczs in reply to tompumo]

For those people who get new lesions. Mine are some 40 years old. I wish I had never started taking Ocrevus.

[IFwczs in reply to tompumo]

And what DMTs are you on? I don't recognize your name from any posts. Are you new?

[tompumo]

I've been on Ocrevus for about 5 years. I was on Copaxone before that. I've been pretty stable for a while, though I'm always waiting for the 'other shoe to drop'. I'm also in my early 60's. My understanding is that the disease progression rate naturally slows down as you get older.

[IFwczs in reply to tompumo]

Are you RRMS or progressive?

[tompumo]

The Dr tells me I'm on the cusp between the two. Though I don't really ever feel like my 'old self'.

[IFwczs in reply to tompumo]

If you've had relapses in the past, it means you have secondary progressive now. I am not a doctor, but I know that Ocrevus does not work for secondary progressive.