Update on Ocrevus.

[Fancy1959]

I have been keeping my ear to the ground and trying to talk to anybody I know who has started Ocrevus. At this point the only people that I have been able to talk to that have started our new miracle drug are patients who are on Medicare. I talked to two this past week that have already had their first doses. So it is still too early to tell what kind of results people are having from the drug. I wanted to let you know anything and everything I hear about it. The only post I have talked to that actually has been on Ocrevus any length of time, came from this chat room and that person was part a clinical trial that started this past January. So far, results from that person seemed positive as their spasticity was improving and their balance issues seem to be less prominent. That is all I know this point. Anything if I hear I will post immediately as interest in our latest, promising therapy is high! I'll ask everyone to keep their fingers crossed or say a prayer or do whatever you do, but wish or hope that this new drug leads us in the right direction for a cure for this terrible monster we all live with!

[Raingrrl]

Hi Fancy1959 ! I appreciate you trying to find out others experiences with Ocrevus. Since I won't be able to start for a few months, presuming I pass the blood tests, I'm very interested in seeing what you turn up!

[Fancy1959 in reply to Raingrrl]

Raingrrl, I'll keep digging and pass along anything I find out. Fancy1959.

[LISAANNE0309]

Hi Fancy1959,

I will be very interested in your experience with Ocrevus. I have advanced MS, that is a type that doesn't fit into one of the named types. After being stable with NEDA for 6 years, I had an exacerbation that began in October 2016 and is still ongoing. My doctor and I decided that I wouldn't wait for the Ocrevus distribution process, but would get Rituxan next week and then again in two weeks. My insurance company initially denied the Rituxan because it is not FDA approved for the treatment of MS, but then approved it after a Peer to Peer review.

Has anyone had Rituxan and what side effects can I expect?

Thanks and everyone have a great Hump Day. Lisa

[dianekjs]

I've gone through the pre-testing/screening and will be scheduled to start as soon as we get insurance squared away. I think I also have to be off the Plaquinel I'm taking for a little while before starting infusions. Will report when I start. Also fwiw, my neurologist said that it is usually after the second set of infusions (six months from starting treatment) that significant improvements may be seen. So - patience required, it seems.

* I try to avoid thinking of this as a miracle drug, as that expectation can easily lead to disappointment. There is certainly good reason to be encouraged and hopeful, however.

[jennie62]

Next week I'll be seeing my neuro and plan to ask him about using Ocrevus instead of Aubagio. Oddly enough I also will start to have Medicare the beginning of May so hopefully neuro and Medicare approve me using it. Having Primary Progressive/Relapsing MS seems to be one of the criteria...should I be happy for having it?

Thank you Fancy1959 for the info! I'll let you know what my neuro says.

[RobertCalifornia]

I change insurance companies April one. As soon as I am approved by the new insurance I will start Ocrevus. My neurologist already has my first dose. The new insurance company has been approving Ocrevus for other patients at my clinic. The clinic is starting infusions this week. My neurologist said to give the new medicine two years before making a decision about it. I have the feeling she conducted one of the trials, but I did not qualify because I was over sixty when the trial started.