Ocrevus (ocrelizumab) has FDA approval

[Frog42]

Finally, Howie uses a pic of himself!

[Virginia]

I too like that Howie is showing up as himself now.

Dar, sorry Ampyra did not work for you. I will be very interested to hear how you react to Acrevus. If it helps you the way Rituxan has helped Linda. Also side effects would be helpful to know. Please keep in touch with us.

[agate]

Yes, Howie, thank you for finally supplying a likeness of yourself.

I should admit that when I was new here, the whole idea of a message board filled with people talking about MS was mind-boggling, and so I started a list of the people here, especially the more active people, just so I could remember who all of them were. I still have that list, and DAR/bntgal is on it.

The list got so long so fast that I gave up on it pretty soon. That's how busy that board was then.

Before there was an Internet and message boards, people with MS who couldn't get very far tended to stay home and not see many people. This board was a whole new world, with real people in it.

So my memory isn't so great. I make a lot of lists.

[ssusan]

Hi Dar, I am also going to start this. I am very excited. It was supposed to pass the FDA last July. Then December. PFinally last week. It is still not available at least here and they are having meeting next week about insurance.

My doc at MS Clinic doesn't have privileges at Northampton or Springfield who does and can prescribe it. Yikes.
Meanwhile I have been on big slide and am going to do 3 daze of Solumedrol next week.

Dar, I am not nervous about it. Good chance it could stop the slide.
-Susan

[stillstANNding]

Good luck to you, Susan. Please report back. Also good lucknw insurance.

ANN

[Virginia]

Ssusan, this is exciting. Please keep us informed as to when you are able to get it, and everything that happens. Are you still R/R?

Good Luck!

[agate]

ssusan, Dar and anyone who is about to start Ocrevus, I hope that it will go well for you and help you.

I'm of two minds about the MS drugs in general and like to think that we're open to all views of the new ones that come along--even negative views.

So, here goes.

Some of the MS researchers have sounded a skeptical note--Dr. Annette Langer-Gould of Kaiser Permanente and Los Angeles Medical Center, for instance, in Health News Review (April 3). I know nothing about this news source, and not much about Dr. Annette Langer-Gould though I've seen her name often as one of the authors of research papers on MS:

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Dr. Langer-Gould is listed as one of a couple of researchers providing "additional clinical expert input" in the creation of this very comprehensive report on disease-modifying drugs in MS (March 2017):

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

[Virginia]

Agate, this is very interesting. I think only time will tell, since so many people are already set to receive this drug. I hope Linda can stay on Rituxan since it has been so beneficial for her. However, it was my understanding that you can only stay on this drug for just so many years or doses. Is this true or am I mixed up with another drug?

[Lazarus]

Agate, this is very interesting. I think only time will tell, since so many people are already set to receive this drug. I hope Linda can stay on Rituxan since it has been so beneficial for her. However, it was my understanding that you can only stay on this drug for just so many years or doses. Is this true or am I mixed up with another drug?

I think you have it mixed up with another drug. Perhaps Novantrone? That had very strict limits and that was then. Now, they won't even give that much because the risks are known to be worse than originally thought.

[agate]

Yes, I'm pretty sure you're thinking of Novantrone (mitoxantrone). It was known to have cardiac risks, and more recently some other problems have surfaced--a colorectal cancer risk, for one thing:

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[ssusan]

I have been secondary progressive for several years. Thanks for good wishes. Meanwhile I am starting 3 daze of Solumedrol tomorrow. Hoping it helps constant motion sickness,vision, monster fatigue blah blah blah
I will keep you guys posted about the new drug.

[stillstANNding]

Thank you, Susan. I hope you improve quickly.

It's interesting to me that we can only get IVSM Monday through Friday. Is our misery or suffering not worth treating immediately?

ANN

[Lazarus]

Yes, I'm pretty sure you're thinking of Novantrone (mitoxantrone). It was known to have cardiac risks, and more recently some other problems have surfaced--a colorectal cancer risk, for one thing:

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

I knew it was novantrone. I took the full amount allowed. I loved it. Felt great while on it. And then...
Although it has been years since I stopped taking it, my doc still orders a nuclear heart test periodically because the heart damage can occur years later.

[Lazarus]

Thank you, Susan. I hope you improve quickly.

It's interesting to me that we can only get IVSM Monday through Friday. Is our misery or suffering not worth treating immediately?

ANN

It depends on where you get the solumedrol. When I got it at the cancer center infusion building it was Monday through Friday. But when I got it at home I could get it anytime. I did it monthly for 4 years.

[Virginia]

Thanks everyone for reminding which drug I was thinking of - Novantrone.

I am excited for Susan and Dar and just hoping they see great improvement and also that both of them keeps updating us. This is the only way we will ever find out anything about this drug. So hoping for good things from it.