SPMS and Ocrevus

[Ikeeptrying]

Is anybody here with SPMS on Ocrevus? My neurologist says it's not used for SPMS but I don't know why not. What do I have to lose? Any side effects, good effects? All info very much appreciated.

[greaterexp]

On your home page, there is a box in the upper right hand corner for "Search my MSAA Community." You might try doing a search with Ocrevus in the box to see who may have more information on that. You could then message them directly. My own searches online in general don't really address SPMS. It couldn't hurt to ask you doctor about it, too.

Let us know if you come up with answers. I'll be watching this post, too, as I think many others have the same question.

[Ikeeptrying in reply to greaterexp]

Thank you. Will do that.

[Ikeeptrying in reply to greaterexp]

I'm having trouble finding the "Search my MSAA Community". I'm not good at this. Will try again tomorrow.

[molex77]

SPMS is a clinical label that has been used Since the mid-1970s however I think it’s worth a shot.

At this point, i’m on my ninth therapy, Ocrevus. Officially my chart says that I’m relapsing remitting sense that’s my clinical course. I have flares and I have remissions but the damage is accumulated. Frankly, I’m certain if I would’ve been at this point 40 years ago, I would be SPMS, by definition.

If your current therapy is not working, I’d find another neuro.....”time lost is brain lost”

[Ikeeptrying in reply to molex77]

I've never been on a therapy. When first diagnosed in the 90's they didn't feel it was severe enough to give me anything. Then I guess I fell through the cracks. I know now I should have hollered but I'd been doing so well...I'll have to find another neuro since this guy is strictly by the book and he says Ocrevus not indicated for SPMS.

[molex77 in reply to Ikeeptrying]

Call The Nmss or Msaa for a list in you area

[Fancy1959 in reply to Ikeeptrying]

Ikeeptrying, like molex77 said, call the national MS Society at 1 800 fightMS and they will hook you up with a caseworker who will look in your area and find you a neurologist practice that they call their Partners In Hope. They will be Progressive in their thinking and they will never give up trying to beat the monster attacking you. Besides what in the heck does a book know about MS? I do not have the phone number for the msaa but Jes does and she will provide it to you once she discovers your plea. Thanks molex77 for your suggestions. You were right on the money! Fancy.

[Ikeeptrying in reply to Fancy1959]

I'm in Kaiser so want to find a more progressive neuro in the network. if that fails I'll call the MS society. Thank you.

[Yooper]

I don't know why you shouldn't be able to try Ocrevus. SPMS is still RRMS as far as I know just in later stages. I would check with Ocrevus. Good luck. God's Peace

[Fancy1959]

Ikeeptrying, it's Fancy1959 I would like to welcome you to our chat room since I do not believe I've spoken to you before. You have found a safe place to come and ask questions, like you just did, voice concerns, and simply speak to people who truly understand. This chat room is full of some of the most caring, kind, and compassionate people I have ever met. Consider yourself now part of our extended family.

You've come to the right place with your question because I too am on Ocrevus and I also have secondary progressive MS. As I understand it the only difference between secondary progressive MS and primary progressive MS is that people with primary progressive MS started immediately with their disability steadily getting worse and never had any relapses or remitting phases in the course of their disease. We did as secondary progressive MS patients had a phase in our disease where we had relapse and remitting MS.

So basically at this point in our disease we are showing the same clinical symptoms as primary progressive MS patients. This disease-modifying therapy will work on our disease as well as the primary Progressive people. So what you said is exactly right, what do we have to lose trying Ocrevus. We had a person, and I do not remember who it was, who had done tons of research on Ocrevus. She told us, and I believe it was a she, not to give up on the therapy because the best results using Ocrevus were found to start somewhere in the 3rd to 4th dose and later in the therapy. So that would mean it takes at least 11/2 to 2 years for the drug to really start making a difference in your disease. In the meantime what we look for with our neurologist is a steady, non changing MRI or a phase of little or no progression of our disease. If we can simply keep our disease from progressing we have already won a major battle and conquered the beast from taking more away from us. And right now I heard that is the primary goal they have set for Ocrevus is to keep our disease from progressing.

So keep your chin up and know we are only a post away if you need us. In the meantime please take care of yourself and remember we are stronger together. I look forward to talking to you soon. Fancy.

[Ikeeptrying in reply to Fancy1959]

Fancy, I can't thank you enough for taking the time to post such a thorough answer. It is so helpful. I so appreciate it.

[Linda3579]

Hi Ikeeptrying, I would echo everything that Fancy said. I too have SSPM. My neuro was very encouraging about starting Ocrevus. I started it over a year ago. I haven’t noticed any improvements yet. The side effects have been minimal, for me, mostly increased fatigue and headache for about a week. Wishing you the best. Lots of good advice here.🙏

[Ikeeptrying in reply to Linda3579]

Have you noticed any changes in your symptoms at all? Would you consider yourself stable.

[Linda3579 in reply to Ikeeptrying]

I would consider myself stable. My spasms have gotten better. My right leg

has gotten a bit weaker. I have had 4 infusions now. Wishing you the best.

Linda

[Ikeeptrying]

I want to thank everyone who replied, especially Fancy. So much good advice. When I originally posted this my neuro was pretty adamant about not using ocrevus for SPMS. But I'm getting worse and ocrevus seems to be my only hope. It sounds like the side effects are manageable. So I'm going to try again to persuade my neuro. I really think they're afraid to use ocrevus since it's not indicated for SPMS and big brother might have something to say about it. It's too bad it takes 1 1/2 - 2years to see improvement. But maybe it will prevent further progression. I feel like I'm rambling here so will make this short. Wish me luck. I love you all.

[Linda3579]

Wishing you luck. I have not had any side

effects since the first two infusions and those were mild. 💕🙏