Ocrevus not for me

[DIsneyQueen]

I have Primary Progressive MS, was on Tysabri and switched to Ocrevus. Have been on Ocrevus for 2 years. Still a steady decline so Neurologist suggested we try Mayzent. Said he has had success with it. We know it is targeted for SPMS, but since there are no other drugs out there for PPMS and it has shown some success there, here I go. Say a prayer. No matter what, I know I am exactly where God wants me to be. Recently 2 people who know I have MS have recently been diagnosed with MS and called for support. So I have been able to pass on the support I receive from you all, so thanks

[rjoneslaw]

I hope it works for you

[DIsneyQueen in reply to rjoneslaw]

Thank you

[greaterexp]

You’re in my prayers! Would you let us know how you’re doing on the Mayzent?

Now go get ‘em!

[carolek572 CommunityAmbassador]

I am hoping that Mayzent will be the DMT for you. Let us know how you are.

[Cutefreckles72]

Hi DisneyQueen, I have PPMS also and my first infusion of Ocrevus was Tuesday. Second one Oct. 15th. I am praying it will do something but if it don't I may have to try Mayzent. I will keep you in my prayers and let us know how it goes. I am looking for any relief.

[IFwczs in reply to Cutefreckles72]

We have to give Ocrevus time. First of all, it's not supposed to reverse our symptoms (even though some people do report improvement, but usually after two years, at the earliest). Ocrevus is the only MS DMT to slow down disability. And, I am not a doctor, but Mayzent is not supposed to work for PPMS. Just my two cents.

[DIsneyQueen in reply to IFwczs]

I agree you have to give DMTs ample opportunity to work and that Mayzent is not supposed to be for PPMS . But after 4 full doses of Ocrevus and continued steady decline my neurologist who has seen some slowing down of progression with Mayzent said he would suggest I try it. He felt I was too active and otherwise healthy to continue to decline every time I saw him. He also said, we could always go back to Ocrevus. So my husband and I felt it was worth a try. Thanks for your input.

[IFwczs in reply to DIsneyQueen]

My neuro never says anything. The thing about Ocrevus was just about the only thing he has ever said. I have to ask him to put me on drugs myself. So please let me know if I have to ask about Mayzent. He diagnosed me with RRMS 5 years ago and won't budge (even though I cannot think of a single relapse).

[raegun67 in reply to IFwczs]

Mine did that to me. I was diagnosed with RRMS in Feb 2014. I just kept telling him if it's RRMS, I've been in relapse since the start of my symptoms in 2007. Steady decline. Went in on my own two feet, no assistance in 2014. I changed neuros in January. I was re-diagnosed as having PPMS. My mobility has kept declining. I went to using a cane until mid-June. Went on Ocrevus, 1st half dose 5/27/19, with 2nd half dose 6/6/19. I have fallen at least once, usually multiple falls, everyday since mid-June. Decline has escalated since on Ocrevus. I figure I will get one more infusion in December, but after that, I'll have to see. I don't expect improvement, but I do expect to stop declining, at least for the price of the damned crap. I really don't see the point in wasting my insurance company's money (yeah, crazy) My PT and Primary care doctor have just ordered me a wheelchair because my mobility has declined so much. Not every medicine will work for everyone. Always remember, a physician may have medical knowledge, but only you know your body and only you live in your skin. There's a reason it's called 'practicing' medicine. Not an exact science, too many variables. Good luck to you, actually, good luck to us all!

[IFwczs in reply to raegun67]

Our mobility kept declining pre-Ocrevus. I don't think any of us can blame Ocrevus for our disability progression. It is not supposed to stop it, just slow it down. My real progression had begun before I got on Ocrevus. I blame MS, steroids and the garbage I was eating. I have since discovered Ann Boroch's "Healing Multiple Sclerosis." If you haven't read it yet, I would highly recommend it. The best improvement I have experienced in my MS was due to this book.

[Cutefreckles72 in reply to IFwczs]

I am at least hoping it will work. After reading all of the different posts about the different medications being taken, I know that they will not reverse MS. I am just hoping one will help. And that goes for either one. Ocrevus or Mayzent. I am open to any relief.

[All7]

Please keep us updated with the Mayzent. This month will be 2 yrs for me on Ocrevus and still steadily declining. I may be trying Mayzent as well. Best of luck to you!

[erash]

Hope the mayzent helps 🙏

[DIsneyQueen]

I will keep you all updated on the Mayzent. You know how insurance goes. Will probably be a month before I get started! It is a pill every day(YEA no more shots or infusions).) I then have a recheck 3 months after I start, so will keep you all posted.

[IFwczs]

Interesting, so you have no new relapses but are switching to Mayzent? What are the signs of your steady decline?

[DIsneyQueen in reply to IFwczs]

I have never had “relapses” . My neurologist said that is typical with PPMS. I walk slower. My left side is affected most, so after I have I have done a lot I have no strength in my left hand. At end of day, getting into car I have to help my left leg. Slow and steady decline, nothing drastic

[Cutefreckles72 in reply to DIsneyQueen]

You and I are direct opposites of each other. My right leg gives me the same problems as your left leg. I have to help my right leg get in and out of the car and bed. It is so straight that I can't bend my knee. My knee locks up. Only when I sit or lay down it bends. When I stand up, its still straight. Left leg is good. You are right about PPMS its a slow and steady decline.

[Juliew19673]

Well your not alone, I was DXED may 2018 and was told they were giving me PPMS so that I could get on Ocrevus. Saw my neuro on Tuesday and asked if he now thinks if it is PPMS or RRMS and he said he thinks it is and I'm going for my 2nd MRI today to see what's going on in my nogin.. I've had 3 Ocrevus in fusions and do feel better, but my brain is the last thing to show improvement (to me) as he thinks I'm "much better" I disagree... Keep us posted on your journey and best wishes!!

[IFwczs in reply to Juliew19673]

The only thing that helped me with brain-related MS issues is Ann Boroch's "Healing Multiple Sclerosis."

[DIsneyQueen]

Thanks and good luck with the Ocrevus. It works for lots of us. Just didn’t like me I guess

[anaishunter]

Hi DIsneyQueen hope that Mayzent will be able to help you put this disease under control. There's so much research underway right now. Don't give up. It looks like you have a good neuro who is open to work with you on finding something that works.