Wondering and coping

[ShellBell11]

Hello, I'm new here, and looking for answers and friends. My biggest question is why aren't there any drugs for SPMS?

[greaterexp]

mayzent.com/info/about.jsp?...

Welcome to a great group! Be sure to look at what MSAA might offer you:

mymsaa.org/

[Jesmcd2 CommunityAmbassador]

Welcome ShellBell11 you came to the right place for friends and answers! Love the name! How long have you had MS?

There is also Mavenclad® (Cladribine) Tablets for SPMS. 😀

I think they were both approved this yr?

Jump in anywhere!🤗💕

J🌠

[ShellBell11 in reply to Jesmcd2]

Hi,

Since hindsight is 20/20, I believe I've had ms since I was 18, diagnosed at 52, am now 62:). Thanks for the info!!

[Jesmcd2 CommunityAmbassador in reply to ShellBell11]

Hi ShellBell11 I was reading the posts here and you need a new neuro! Call Toll-Free Helpline: [phone] MSAA and let them help you find a good one! 🤗💕🌠

[IFwczs]

I have read somewhere that now Ocrevus is FDA-approved DMT for SPMS. I was thrilled because, even though I was diagnosed with RRMS, I am pretty sure I have the progressive kind. Remember - it is the only MS DMT to slow down disability progression.

[ShellBell11 in reply to IFwczs]

Good luck! After months of trying to get in to the OHSU MS clinic, and a 3 hour appt., they said I couldn't try Ocrevus because I didn't have the "right kind" of ms…..it was devastating to hear.

[IFwczs in reply to ShellBell11]

Read this and get a second opinion - these people are incompetent:

multiplesclerosisnewstoday....

[hairbrain4 in reply to ShellBell11]

It almost sounds as if that MS Center isn't up on all the latest research. Ocrevus has been approved for SPMS.

[erash]

MS is thought by some to be on a continuum. There is no distinct separation between RRMS and SPMS. So, I think dependent on your disease activity and inflammation, there are likely a number of DMTs that could be effective.

[ShellBell11 in reply to erash]

Yes, there are many, however they won't allow me to try ANY because I don't have the "right kind of ms".

[erash in reply to ShellBell11]

Because of the indistinct continuum b/w rr and so why can’t they simply say rr?

That’s what my neuro said. I’ve had no new lesions x 13 yrs

[ShellBell11 in reply to erash]

Not sure, maybe because it's already documented.

[erash in reply to ShellBell11]

yeh, maybe

[IFwczs in reply to ShellBell11]

This language means you really need to go elsewhere.

[Cutefreckles72]

Hi ShellBell11, welcome and you are with the right group of people to learn from. I was dx Jul 31 this year and since than I have learn and received a lot of good information from everyone. I will have my first infusion of Ocrevus on Oct. 1st. I am praying that it will work.

[agate]

ShellBell11 , apparently SPMS hasn't been an easy type of MS to come up with drugs for. A couple of the newest drugs are now supposedly "for" SPMS but it turns out they're only for what is being called "active SPMS," meaning that the patient is still having relapses. If you are in that category, then one of the new drugs might work for you. I've had SPMS since about 1978-1980, had Avonex for 3 years, then Copaxone for nearly 3 years, and neither of them seems to have done anything for me though I don't think they did me any harm either.