Has anyone with Secondary Progressive MS been prescribed Ocrevus or is on it?

[Pia7]

I was diagnosed with RRMS in 1996 and about seven years ago my doctor took me off Avonex and I went on Gilenya. That didn’t work for me at all, I quickly worsened and now I have SPMS. My doctor doesn’t want me back on Avonex instead wants me on Ocrevus. I’m just not sure if this will work for SPMS.

[erash]

Hi! I'm 59y have had MS for around 12yrs and no changes in MRI X diagnosis 12 yrs ago. I was on betaseron briefly and copaxone X 2 yrs but because of minimal symptoms and unchanging MRIs, my neuro agreed I could stop all meds X 10 yrs ago. I was informally diagnosed SPMS. And Unfortunately, my symptoms have slowly increased. My neuro was not convinced I would benefit from Ocrevus. But recently I've had 2 ? Relapses that responded very well to steroid infusions and made me and the neuro wonder if maybe I still had active disease that could respond to Ocrevus. So I'm going to be starting Ocrevus in a few weeks...and I'm very hopeful it will slow further decline.

RR SP PP MS seem to be on a continuum with subtle differentiations. Ideally, MS is best treated by most DMTs that target inflammation, a key in RR. But some DMTs, Ocrevus is one, also benefit brain atrophy (SPMS). And we also know MRIs may not be sensitive enough yet to show the whole picture (activity in SPMS?)

Weigh your options, research the risk/benefits and best of luck 🌈

[Elizt3]

I'm in a similar position. Dx in 1996. Been on a host of meds. Recent MRI shows progression and new symptoms in May. I don't think anyone knows when we are officially SPMS. I have asked but haven't gotten a straight answer. Perhaps because I generally "look" good, fairly good neuro exam? I should be starting on O in a month or two? Waiting for a call from the O company.

[Yooper]

I was diagnosed with PPMS in 2004 and started with Novantrone. I did one year(4 treatments). Somewhere along the line, one of my neurologists changed it to SPMS. I have been on Ocrevus for one year and told my current neurologist that I don't feel any better, maybe even weaker. I did my one year infusion and now the insurance company refused payment because I was not getting better. Now I am in an insurance battle. I pray this will work out for you 🙏.

[JTZES]

I was diagnosed in 2013. I averaged an exacerbation every 3 to 4 months. Like you I have been on Copaxone, Avonex and Gilenya.

I started on Ocrevus 3 months ago with no known exacerbations but on MRI results I have had several lesions that have enlarged but at the time of the MRI nothing was active.

Ocreves is a modified chemotherapy and has shown great results in comparison with other DMT's.

With Ocrevus being chemo based it really wipes out your system of all your natural defenses. I have had a lingering bacterial infection since my second week after infusion. This does have the ability to cause PML but no cases have been reported as it has been with Tysabri.

This seems to be one of the most effective DMT's on the market. Having a cold for several months I feel is a fair trade off. It is definitely worth a try. Any med that slows progression is worth a try in my opinion.

[kymrob91457]

I also have SPMS. I decided to try Ocrevus. If it works for RR and PP, why wouldn't it work for SP? I have had both half's, and am waiting for my 1st full dose. I have a friend who has felt results. She can move her toes, and fingers. She hasn't been able to do that for five years. She does have RR, but...who knows! I'm giving it a try, what can it hurt! You have to do what's best for you. Good luck with you're decision!

[tnolan2006]

All MS is inflammatory, all MS involves accumulating brain damage. You are considered progressive once your neurological reserve depletes, preventing new pathways from compensating for accumulating nerve damage. MS can be very active or much slower and early or advanced. All MS patients should be treated to prevent further damage. The MS labels just serve to isolate different patients and were originally developed to qualify RRMS as an orphan disease and to guide clinical trial design. Now it is used to limit treatment options.