For "older" Ocrevus folks

[greaterexp]

I'll be reaching 60 soon and wondering about those who are older than, say, 50 and who were prescribed Ocrevus. What criteria did your neurologist use in prescribing it? Was it about disease activity, as in were you still having relapses?

[erash]

Age wasn’t factored into the decision. My disease was progressing but no new lesions x diagnosis — so no other viable options at that point (age 59 when started).

[greaterexp in reply to erash]

Thanks for letting me know. How are you doing!

[erash in reply to greaterexp]

Really good days alternating with kinda crappy days. 🤞will get to a better ratio of good vs bad

[All7 in reply to erash]

That’s what makes it so hard to gauge the effectiveness of any of these drugs, don’t you think?

Some days I actually think “Not too bad, I’ve got a grip on this!” And the next day it knocks me upside the head and says “What the hell were you thinking? ? HA !”

[greaterexp in reply to All7]

That seems to be the way it is for many of us. One day, I’ll think I can actually exercise or get a big project done, but the next day I’m looking at mobility scooters online.

[greaterexp in reply to erash]

I sure hope so. I know the aim is to at least slow progression, but improvement should would be nice!

[All7]

Hi...I’m 61 and will have my third full infusion next month., so 4 total. With me it became a matter of nothing else working. I was off Rebif for a few months after years of being on it, then Copaxone and gylenia, both did nothing. I was still getting worse. Between O and Lemtrada, my neuro felt O was the better option.

[greaterexp in reply to All7]

Was it because of relapses or just progression?

[All7 in reply to greaterexp]

Definitely progression. I’m just hoping O will at the very least stop that and let me plateau. I’d be happy with that. But there again, maybe I’d be worse than I am if I wasn’t on O. Always a crapshoot!

[Elizt3]

I’m 54. Ms diagnosed 23 years ago. Been on injectables and oral meds thru those years. A relapse and new MRI activity last year lead my neurologist to recommend O. I’ve had the two half doses and then the full dose in July. Seem to be doing ok. I’ll have an mri in December.

[hairbrain4]

I'm 64 & have had 2 half doses one full dose. I will be getting my 2nd full dose next month. I changed to O because the Copaxone injections were becoming very painful & issue starting to deteriorate on my arms & leaving knots on my hips. I had already tried Techfedera & it didn't work very good for me. Age wss never part of the equation.

[pamgarner]

I am 64 and had my 4th treatment of ocrevus,he switched me because I was progressed to secondary and had new lesions(old med quit working).My neuro told me "you can have progression ,new symtoms,and no new lesions,and you can also have new lesions and no new symtoms.I think I do better on something daily or every other day,i think i do better keeping something in my system,but I am going to stick with it awhile longer

[carolek572 CommunityAmbassador]

I switched because prior DMT wasn't doing the job. Not sure if age (55) factored into the decision as my neuro handled everything. Since my diagnosis, I have been told of no new lesions or activity, but at my diagnosis (2006), I had many lesions on my spinal chord and a few in the brain, so most damage was already done.

[bavery207]

I was 65 when dx with PPMS. I turned 66 just as O was approved and started it about 4 mo, later. I recently had my 4th FULL dose of O, and although my balance is worse my fatigue is much better. Due to other medical issues I cannot have MRIs. My neuro is now monitoring my white blood cell count as one part of it has been steadily going down. He did not know of an age related reason. I may have to stop O for awhile and see if my blood count will go back up.

[greaterexp in reply to bavery207]

I hope you can continue to take it, especially since it appears to be helping in some areas.

[Pia7]

I am 54 years old and I’ve been on Ocrevus for one year. My neurologist wanted me on it because she said I was still young and a good candidate for therapies to regain what’s been lost due to ms. According to her we’re about 10 years away from that and she wanted to keep me from worsening so I would still be eligible.

[greaterexp in reply to Pia7]

How are you doing with the Ocrevus?

[Pia7 in reply to greaterexp]

I’m really happy with Ocrevus. It has helped greatly with fatigue. Also in the year I’ve been on it, no worsening of symptoms.

[kycmary]

I was 61 & had a bad execration put me in a nursing home for 2 months. Had to learn how to do lots of things again. Tysabri helped me regain a lot but I was positive for the JC virus so at 65 & 1/2 they put me on Ocrevus. I will be on it 1 yr in Dec I'm doing great. I've had MS for 25 & 1/2 yrs. It has been said when you get older 1 does not have to take DMT can't prove it by me & I'm not willing to be a Guinee pig for them!! Mary

[greaterexp in reply to kycmary]

Thank you for that. At times, I wonder about stopping the Copaxone and taking nothing for a DMT, but I hear enough about folks over 50 and 60 having relapses and am not sure I want to risk another one with its down time and residual damage.

[kycmary]

I would be too scared to do that