More on Ocrevus

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.

13 Replies

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  • 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 🦋 🌈

  • Thank you for the information.

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

  • 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🌠

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

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

  • 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.

  • Did you have a good birthday mrsmike? 🦋🌈

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

  • 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.

  • 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!

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

  • 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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