Ocrelizumab....possible next choice if Rituximab becomes ineffective

[Lazarus]

I googled it and there is a lot to read. My impression is that it might be tried on people with PPMS

I forgot to say that my neuro mentioned it for me to try if my next round of Rituximab does not work. At if we decide it is not working at some point. I have gotten somewhat worse but am hoping to regain most of what has worsened.

[SuzE-Q]

Good luck, Linda, hope it works well. I'll have to read up on it too, can't say I know a lot about it either.

[agate]

Maybe you won't need to switch, Linda, but if you do, I hope you'll get good results from it.

A couple of days ago I added the MSAA 2015 research update to the Useful Websites sticky thread. This is what it says about ocrelizumab in case you haven't seen it already:

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

[SuzE-Q]

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

Looks really interesting! Am I reading right that the lower dose may actually be preferable??

[agate]

I think it might depend on what you're looking for in MS therapy. The 2,000mg dose resulted in a 96% reduction in the total number of brain lesions on MRI while the 600mg dose resulted in only an 89% reduction.

On the other hand, the lower dose had a slightly higher reduction in the annualized relapse rate compared to the 2,000mg dose--80% vs. 73%.

My guess is that prescribing doctors might want to go for the lower dose, especially in view of the patient who died "of a systemic inflammatory response of unknown etiology." This has an ominous ring to it but it is only one patient, who might have had other conditions contributing to the death.

And these are clinical trials. The dosage that is finally marketed might be quite different, seems to me.

Linda, I wonder when this drug will be available if they're still running clinical trials?

In the coming week there is the annual conference of the AAN. Maybe some interesting studies of this drug will be forthcoming.

[Lazarus]

Maybe you won't need to switch, Linda, but if you do, I hope you'll get good results from it.

A couple of days ago I added the MSAA 2015 research update to the Useful Websites sticky thread. This is what it says about ocrelizumab in case you haven't seen it already:

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

Oh gosh thanks agate!
That is a perfect page to explain what I have been doing (Rituximab) and what I might do next.

The farm is getting busy now and I am aware that I will lose touch on a steady basis....but not yet. But I wanted to include a general thank you for all the effort you put in here.

[Cherie]

When I looked at ClinicalTrials.gov, i had the end date of the trial in 2017 with submission to FDA tentatively at the end of the year or early 2018. I have to say I do not feel as well since I went off the Rebif and did my first course of Rituxan. More symptoms present most of the time.

[SalpalSally]

Why did you stop Rebif, Cherie?

[Lazarus]

I think it might depend on what you're looking for in MS therapy. The 2,000mg dose resulted in a 96% reduction in the total number of brain lesions on MRI while the 600mg dose resulted in only an 89% reduction.

On the other hand, the lower dose had a slightly higher reduction in the annualized relapse rate compared to the 2,000mg dose--80% vs. 73%.


My guess is that prescribing doctors might want to go for the lower dose, especially in view of the patient who died "of a systemic inflammatory response of unknown etiology." This has an ominous ring to it but it is only one patient, who might have had other conditions contributing to the death.

And these are clinical trials. The dosage that is finally marketed might be quite different, seems to me.

Linda, I wonder when this drug will be available if they're still running clinical trials?

In the coming week there is the annual conference of the AAN. Maybe some interesting studies of this drug will be forthcoming.

Is the conference you mention in D.C.? My neuro was real excited about a conference he was going to.

I do not know anything about when or what the dosage will be. He mentioned it as the choice when I asked about Lemtrada. That was interesting. i think I was being redirected because he was concerned about Lemtrada. I am setting up the next Rituximab infusion and if that works it will send me down a certain path for another 6-8 months.

There is something else you said that interests me. I have MRIs every year or so....I never show enhancing lesions. I have brain, thoracic, spinal and something else. Four parts.
When I was first diagnosed there were tens of lesions. That MRI showed my brain lit up like a Christmas tree.
Yet I have had a slow progression since. Most of the time there is no enhancing lesionthat shows on my MRI. Maybe deeper in my brain but I think the connection is not always there. There is a thread on MSWorld about this very point .

Anyway, wherever I turn now there are options for treatment that keep popping up. Yesterday I got an article from a friend with PPMS about a Biogen? Product that is repairing nerve pathways destroyed by MS. I thought I posted it but I will make sure I did/do!

[agate]

Is the conference you mention in D.C.? My neuro was real excited about a conference he was going to.

I do not know anything about when or what the dosage will be. He mentioned it as the choice when I asked about Lemtrada. That was interesting. i think I was being redirected because he was concerned about Lemtrada. I am setting up the next Rituximab infusion and if that works it will send me down a certain path for another 6-8 months.

There is something else you said that interests me. I have MRIs every year or so....I never show enhancing lesions. I have brain, thoracic, spinal and something else. Four parts.
When I was first diagnosed there were tens of lesions. That MRI showed my brain lit up like a Christmas tree.
Yet I have had a slow progression since. Most of the time there is no enhancing lesionthat shows on my MRI. Maybe deeper in my brain but I think the connection is not always there. There is a thread on MSWorld about this very point .

Anyway, wherever I turn now there are options for treatment that keep popping up. Yesterday I got an article from a friend with PPMS about a Biogen? Product that is repairing nerve pathways destroyed by MS. I thought I posted it but I will make sure I did/do!

Yes, the AAN annual conference is in Washington, DC, this year, April 18-25.
I don't know if xo++ will be around posting some abstracts from that conference this year. Years ago he did that, and the last I heard he was working on a thread to replace the Conventional and Alternative Therapies thread he used to have here.

If he doesn't turn up, I can post some abstracts but he does a better job of it.

About the MRIs: You can learn only so much from an MRI, apparently. There's often no correlation between what shows up on an MRI and how the patient is feeling--how disabled the person is, what symptoms are present. Not having enhancing lesions is good. The MS is probably going to progress at least slightly as time goes by, no matter what the MRI shows. Very unfortunately.

[Cherie]

Why did you stop Rebif, Cherie?

The copays went to $2000/month when I went on Medicare last fall. After paying $7100 between October and mid January, I needed to find an option that offered protection but Medicare would cover. They would not cover any of the orals or injectables because, although our income was low enough for assistance, we own real estate as part of our retirement package. They wanted us to sell a house to cover the cost of meds for a year or two. Now, Serono has found a foundation to cover up to $6000/year in copay AFTER I had the two doses of Rituxan. Anyway, right now getting BP down and well managed is goal. Maybe I will feel better when that is accomplished.

[SuzE-Q]

Referring back to rituximab, here's some good news:

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

J Neurol Sci. 2015 Apr 16. pii: S0022-510X(15)00207-5. doi: 10.1016/j.jns.2015.04.010. [Epub ahead of print]

Rituximab treatment did not aggravate ongoing progressive multifocal leukoencephalopathy in a patient with multiple sclerosis.

Asztely F1, Gilland E2, Wattjes MP3, Lycke J2.


Abstract
A multiple sclerosis (MS) patient developed progressive multifocal leukoencephalopathy (PML) after 43months of natalizumab treatment. New clinical and magnetic resonance imaging (MRI) findings were initially misinterpreted as breakthrough MS disease activity and natalizumab treatment was replaced by rituximab treatment.

The patient had a single infusion of rituximab 1000mg before a definite PML diagnosis was confirmed. Despite undetectable levels of B-cells, JC virus DNA became undetectable in the cerebrospinal fluid by quantitative polymerase chain reaction. The patient partially recovered without any clinical or MRI signs of new MS activity.

These findings suggest that B-cell depletion in a non-immune compromised individual did not prevent the patient from clearing the JC virus infection.

Copyright © 2015 Elsevier B.V. All rights reserved