More on Ocrevus: I had an appointment with... - My MSAA Community

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More on Ocrevus

BillD999 profile image
13 Replies

I had an appointment with my neurologist today and he gave me an update on this drug, also known as ocrelizumab. It supposed to be approved any day according to my dr, but there are questions about how the drug will be labelled and who will be able to get it. As I understand it, this has to do with the way the clinical trials were designed and the question about where SPMS fits into the spectrum of MS.

This does not mean people with SPMS won't be able to get the drug, it depends on the labeling and how your dr has classified you. My dr was curious himself to see how the label would read.

As for my condition, my dr saw very little change in 6 months by his testing, although I am aware of continued progression. I was told to "keep up the good work" - diet exercise, Ampyra, Biotin, etc. I guess I'll stick with it, as I think I'm doing pretty well compared to many others.

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BillD999
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13 Replies
jimeka profile image
jimeka

Hi Bill, eased to hear that you had a good appointment. Did your neurologist mention about the risk of tumours with this new drug? Thanks 🦋 🌈

Morllyn profile image
Morllyn

Thank you for the information.

erash profile image
erash

Glad u had a good neuro appt BillD999 and thanks! For the update on ocrevus

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi BillD999 So happy to hear you had a great appointment! Getting good news is always a boost to everyone! Keep up the good work!

Jes🌠

bavery207 profile image
bavery207

BillD999 Thanks. I have been wondering and have not seen a recent update.

rdrunrnm profile image
rdrunrnm

FDA is supposed to issue a statement for Ocrevus on March 28th.

mrsmike profile image
mrsmike

Hii BillD999,

Thanks for the update. It seems I'm in the same position your in. Neuro says I'm doing well and keep up the good work, but I also see the slow progression and each day I hope that it will go no further. Hoping that ocrevus will be the "miracle" drug for us all.

jimeka profile image
jimeka in reply tomrsmike

Did you have a good birthday mrsmike? 🦋🌈

mrsmike profile image
mrsmike in reply tojimeka

My birthday was good thanks, even though the 18 inches of snow that day put some plans on the back burner.

greaterexp profile image
greaterexp

BillD999 , what good news from your doctor! I'm sorry you are still seeing progression, but I pray it's very slow. I appreciate your cheerful attitude. I take courage from the good news and the wonderful attitudes expressed here.

Please keep us updated.

WAshingtongirl profile image
WAshingtongirl

Thanks for the update, BillD999 . I think we all are all waiting on the drug's release. I'm pleased to hear your doctor feels you are stable. My recent MRI said the same. But like you, I've noticed a slow but steady progression. My neuro said MRIs show disease location, but they are unable to measure the lack of function. Keep up the positive attitude!

Taylorsmom profile image
Taylorsmom

BillD999 Yes, keep up the good work that you're doing and stay prayerful!!!!

Raingrrl profile image
Raingrrl

Thanks for the update BillD999 ! It's good that your test results are stable even though you feel that you are progressing. I've been in the same situation for the last few years. Its one of the things that is maddening about this crazy disease!

I will be talking to my neuro about ocrelizumab at my 6 month check up in April. Especially if my JCV index doesn't improve.

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