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Thread: MSAA booklet on understanding progression in MS

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    Distinguished Community Member agate's Avatar
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    Default MSAA booklet on understanding progression in MS

    Sanofi-Genzyme (makers of Ocrevus) has put out a booklet, "Understanding Progression in MS," being distributed by the MS Association of America. It's available as a .pdf file:

    https://mymsaa.org/PDFs/Understandin...sion_in_MS.pdf

    This part came as news to me:

    Types of MS

    MS affects each person differently. For many years, the most common types of MS had been classified as:

    • relapsing-remitting MS (RRMS)
    • primary-progressive MS (PPMS)
    • secondary-progressive MS (SPMS)
    • progressive-relapsing MS (PRMS)

    However, these classifications are changing, and some experts are now grouping relapsing-remitting MS (RRMS) and secondary-progressive MS (SPMS) together, as a continuum of the same disease. These are now frequently referred to as “relapsing forms of MS.” Additionally, progressive-relapsing MS (PRMS) and primary-progressive MS (PPMS) have also been grouped together. These are now frequently referred to as “progressive forms of MS.”
    So when you hear "progressive forms of MS," that might mean just PPMS and PRMS, not SPMS. It's a bit confusing.

    When I heard that Ocrevus was going to be available for "progressive forms of MS," I wondered if that meant people with SPMS. Apparently not. Except that the booklet also says:

    Currently, many individuals with progressive MS continue on DMTs used to treat relapsing forms of MS. Although not approved by the FDA for this type of MS, these individuals have a perceived benefit from a DMT for MS – even in the secondary progressive phase of the disease. Their treating neurologists believe that the DMTs approved for RRMS reduce inflammation in all MS, including progressive MS. As always, people with progressive MS are encouraged to discuss treatment options with their neurologist.
    And throughout this booklet there is discussion of "progressive forms of MS" without letting people know whether that includes SPMS. I'm guessing that it probably doesn't include SPMS but it's just a guess.

    --Which means that Ocrevus probably isn't for SPMS. Here again I'm guessing.
    Last edited by agate; 09-19-2017 at 05:55 PM. Reason: fixing typos
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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