Ocrevous scheduled Yay!!!

[Lazarus]

I see you are in MA. I go to Beth Israel in Boston. I get 1000mg in one dose instead of splitting it into two 500mg doses. My neuro said that there is evidence that it works better this way.

I asked my neuro today. I am getting 1,000 mg in each infusion so that is 4,000mg a year.

[agate]

MS experts offer views on Ocrevus a year after FDA approval (MS News Today)

Interesting article in Multiple Sclerosis News Today, March 28--"MS Experts Offer Views on Ocrevus a Year after FDA Approval":

Only registered and activated users can see links., Click Here To Register...

[Howie]

An every 6 month infusion sounds good.

[agate]

Interesting that having an infusion only every 6 months causes some people to be concerned that they're not doing enough for their MS. It's hard to realize that one infusion can keep working over those 6 months.

[Lazarus]

Interesting that having an infusion only every 6 months causes some people to be concerned that they're not doing enough for their MS. It's hard to realize that one infusion can keep working over those 6 months.

It is 2 infusions every 6 months. There is one day of infusion and then another one 2 weeks later. I have been doing this for many years now and it is easy. Very few..if any..sideffects.

[Lazarus]

Interesting article in Multiple Sclerosis News Today, March 28--"MS Experts Offer Views on Ocrevus a Year after FDA Approval":

Only registered and activated users can see links., Click Here To Register...

That was interesting...what vaccines do they give 6weeks before infusion???
The cancer statistic is what my neuro can use to argue to keep me on rituxan...because of my cancer history.

[Virginia]

I also would like to know what vaccines they are talking about?

Another thing - they keep saying Ocrevus is for RRMS and PPMS. How and why do they just skip over SPMS? I think that the video posted on here by someone, of one of the Doctors discussing Ocrevus said it was for all types of Progressive MS. Does anyone remember that?

[agate]

I also would like to know what vaccines they are talking about?

Another thing - they keep saying Ocrevus is for RRMS and PPMS. How and why do they just skip over SPMS? I think that the video posted on here by someone, of one of the Doctors discussing Ocrevus said it was for all types of Progressive MS. Does anyone remember that?

They mean vaccinations of any kind.

I'm pretty sure that the doctor who indicated that Ocrevus was for all types of progressive MS must have changed that by now because I haven't seen that mentioned anywhere else since then.

They have trouble developing drugs for SPMS because people with SPMS who are no longer having relapses--and that is most people with SPMS--are hard to monitor. The MRIs for SPMS often don't show many new lesions, either, and so the researchers would find it hard to figure out whether a drug was working. So new drugs don't get tested on people with SPMS very often. Still, quite a few neuros have been prescribing the DMTs anyway for SPMS patients.

I believe that the disease is usually too well established in many people with SPMS, and it's thought that the drugs work only when the disease is at the inflammation stage--which most people with SPMS seem to be beyond. Very sad but so far they just don't know enough.

SPMS is secondary. It had to be RRMS at some earlier time, maybe before the patient realized anything was wrong. So considerable time will have passed before a person's MS becomes SPMS, and during that time the disease may have settled in to the point where inflammation is no longer occurring.

[agate]

Followup on this discussion: There's an article in Business Wire based on some announcements by Genentech, mostly about how spectacularly well people are doing on Ocrevus, but it also includes information about two new studies. One of them involves Ocrevus for SPMS:

The second study, named CONSONANCE, will evaluate the efficacy of OCREVUS in the complete spectrum of progressive MS (PPMS and secondary progressive MS (SPMS)). The CONSONANCE study will measure the long-term effectiveness of OCREVUS in progressive MS with novel composite disability endpoints, including No Evidence of Progression (NEP) and No Evidence of Progression or Active Disease (NEPAD), in addition to a wide range of patient-relevant measures and advanced MRI outcomes. The four-year, Phase IIIb study is currently enrolling 600 people with PPMS or SPMS (in a 1:1 ratio) from across 26 countries. The study will also explore whether technology-enabled, continuous sensor-based and self-administered measures may detect changes in disability progression earlier than conventional clinical measures.

So they are thinking about using Ocrevus in SPMS, and in fact I think some doctors are already prescribing it to people with SPMS.

Link to the Business Wire article:

Only registered and activated users can see links., Click Here To Register...

A couple of people who were here a while back and taking Ocrevus haven't been heard from lately--Jen's Solitude (Dar) and Tweeker. There may be others as well. Hope Ocrevus people will share their experiences!

[Lazarus]

Followup on this discussion: There's an article in Business Wire based on some announcements by Genentech, mostly about how spectacularly well people are doing on Ocrevus, but it also includes information about two new studies. One of them involves Ocrevus for SPMS:



So they are thinking about using Ocrevus in SPMS, and in fact I think some doctors are already prescribing it to people with SPMS.

Link to the Business Wire article:

Only registered and activated users can see links., Click Here To Register...

A couple of people who were here a while back and taking Ocrevus haven't been heard from lately--Jen's Solitude (Dar) and Tweeker. There may be others as well. Hope Ocrevus people will share their experiences!

Aren’t the Ocrevus makers also the rituxan makers? They have known for years that rituxan can be helpful to progressive forms of MS. I have SPMS and have been on rituxan for years. The Ocrevus ‘news’ is the kind of news that should make us follow the money trail.
Rituxan’s drug status was running out and so Ocrevus, an identical drug, was created. And the money keeps flowing.

[Sunshine]

Yah, this really pisses me off how that occurred.

[Howie]

Well, it didn't seem to fool any of us.

[Cherie]

Almost 6 months have gone by.
Scheduled for 1/23. Can’t wait!!!
Whatever benefit I got from first infusions didn’t last more than a few weeks.
Has anyone done 2nd one at six months?
How long did it take, how did full dose feel?

We, at Only registered and activated users can see links., Click Here To Register... , tried to design a clinical trial that looked at three different classes of DMTs head to head to see if patients noticed any improvement in their MS Symptoms while on the meds. Genentech told us they would not participate as Biogen had agreed to be in the trial with Tysabri and historically patients have noted an improvement in some symptoms in as little as a couple of infusions. They told us at Genentech that it took the average user of Ocrevus a year and a half or 6 infusions to notice any improvement in fatigue, gait, pain, sleep (the symptoms we were planning on tracking). I have been on Rituxan now for 3 full years on recommended dosing (2 years prior to that on fewer than recommended doses) and it was not till after a year on the recommended dosing (4 infusions) that I started to see some improvement. Hope that helps to put things in perspective for you.

[Virginia]

Linda, do you remember how long it took you to see any improvement after you started Rituxan??

[Lazarus]

We, at Only registered and activated users can see links., Click Here To Register... , tried to design a clinical trial that looked at three different classes of DMTs head to head to see if patients noticed any improvement in their MS Symptoms while on the meds. Genentech told us they would not participate as Biogen had agreed to be in the trial with Tysabri and historically patients have noted an improvement in some symptoms in as little as a couple of infusions. They told us at Genentech that it took the average user of Ocrevus a year and a half or 6 infusions to notice any improvement in fatigue, gait, pain, sleep (the symptoms we were planning on tracking). I have been on Rituxan now for 3 full years on recommended dosing (2 years prior to that on fewer than recommended doses) and it was not till after a year on the recommended dosing (4 infusions) that I started to see some improvement. Hope that helps to put things in perspective for you.

Good info Cherie. I have been trying to explain that rituxan is not a quick fix...although I saw improvement in small steps from the 6 month mark onward. Noticing small improvements is difficult when you are looking for the Big Bang.