Ocrevus

[dallas343]

Anyone use Ocrevus and it didn’t work at all for them?

[Jesmcd2 CommunityAmbassador]

Hi dallas343 welcome to the funny farm! And what exactly do you mean by it didn't work? I have been on it for 3? Yrs and as my neuro says, I broke through it. 😔 2 relapses and a new hole in my head. So??

On the other side, DMTs are only made to slow down the progression of MS, not stop it.😔🤗💕🌠

[Raingrrl in reply to Jesmcd2]

Jesmcd2 ...is your neuro talking to you about switching from Ocrevus? I think mine wants to have a DMT convo and asked me to set up an appointment. 😳 Tuesday is D day.

[erash in reply to Raingrrl]

Please let us know how that goes

[TDonahue58]

Unfortunately, that DMT put in the hospital for a week followed by two weeks at rehabilitation hospital

[twooldcrows]

have had a great time since being on it ...

[rjoneslaw]

I have had any issues. I have improved. Plus my pt has said people has worked has improved as well

[Raingrrl]

I’ve been on Ocrevus for 3 years and up until my last MRI, it kept me stable. No improvements but I didn’t expect any since that isn’t the intention of the DMT’s. Unfortunately, my last MRI showed a new lesion so my neuro is unhappy and calls it disease breakthrough. I think she wants me to switch treatments.

[erash]

I did extremely well on it x 3 infusions. Then my symptoms continued to progress rapidly (x 4 doses). Given my age and the current pandemic environment, and a probable diagnosis ppms (at least spams), I’ve recently decided to stop Ocrevus. I’m waiting for the next break through for progressive MS 🙄

[leking1 in reply to erash]

I'm sorry to hear that erash. I'm still waiting, too. Have been for over 10 years now, but nothing new or effective for my SPMS. Hope you have better luck!

[kwhompus in reply to erash]

ditto !

[IFwczs in reply to erash]

Same here.

[ahrogers]

I have been on it since 7/2016 and haven't had any new lesions on MRI since then. My right sided weakness has increase slightly and some more difficulty emptying my bladder has happened during that time though.There have been a few more DMTs approved since then so there are newer options out there.

Good luck with your neuro appt!!

[kwhompus]

The thing about DMT's is ,we don't know if the're working until we stop taking them. Would we be worse off if we had not had them or better if we had ???? How do you know with a disease that progresses at a different rate for each of us.

[erash]

so true

[mcknighm]

Well it’s supposed to slow down progression. In 2 weeks , I’ll have another MRI to make sure they don’t see any new lesions .

[ROGERMRAC]

I have been on it for 5+ years and have had nothing but praise for O. I have been on 5 different DMD and O is the only one that I have no issues with. All others made me feel like I had the worst flu ever, but with O I have had no issues. No leasons and no flares since starting. my balance has improved, my energy has returned and I have felt so good after starting. I am seeing my life get better because of it

[JMWCO]

I’ve only ever been on O. I’ve had no new lesions; one actually reduced in size. I e had some odd lower back compression affect on my legs but they say that’s aging vs MS.

I had the spurts of energy the first year I was on O and now it’s been the same. However like every one mentioned DMTs are like birth control you hope it’s working till your preggers like COVID vaccine 🤣🤣🤣🤣

[hearl]

Yes. I have PPMS and was on it for a year+ and not only did it not help, it made me feel worse than before I started it. My neuro took me off it and finally, after 8 months am starting to feel better.

[anaishunter]

I've been on Ocrevus for 3 years. I'm a lucky one in that it totally stopped any progression so far, I've exercised plenty to regain a lot of what I had lost (not all) and I don't have any side effects.

[Cutefreckles72]

I haven't had any problems. Next month will be my 5th infusion. I hope its working. I still have the stiffness and tightness in both legs.

[Mollyabigail]

My very favorite resource for MS, Dr. Aaron Boster (check YouTube for his great videos) describes DMT's this way --- DMT's are like birth control. They won't get rid of the kids you "already have". But they prevent you from having additional kids. [kids = your present symptoms].

I love Dr. Boster. I would drink his bath water! 😂